Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives SHARING KNOWLEDGE, SAVING LIVES AIDS: FEAR AND ANXIETY HIV can bring a lot of anxieties. One way of tackling this is through getting information, by learning about your condition, gaining confidence in it, in yourself and making informed choices for your future. Receiving a positive diagnosis, even if you were anticipating the result, is often very unsettling. As a result some people just accept the information given without really understanding, or forget to ask questions essential for the peace of mind. However, being well-informed about HIV and related issues can be vital and doctors, support organizations and other people living with HIV can all provide both advice and information. Although the issues HIV raises can be surrounded by jargon, being assertive and getting informed can be as useful as any treatment. Being diagnosed HIV positive can be devastating to deal with but it is not necessarily a death sentence, or something you need to cope with on your own. Being anxious or fearful of having HIV and all that it entails is perfectly natural. Fear and anxiety is just a couple of many emotions you will inevitably feel, and you will have to manage. How to respond to feelings you experience is a personal thing but it is not something that has to be done alone. It can be perfectly natural to worry about AIDS. Because HIV is a virus that can be transmitted from one person to another, but there are very specific ways of becoming infected and often many of the ways you think to have caught the infection was wrong. HIV is a virus that cannot just appear from two people who do not have it. ―It is important to know how you can and cannot get infected‖. It is important, however, not to let worry or fear stop you from being rational about the reality of infection. If we have been involved in any activity that is deemed risky or feel may have been exposed to HIV then it is important to know how we can and cannot be infected. If we have read the ways in which we can and cannot get infected then we should be able to work out whether or not we are genuinely at risk of having been infected. And if we believe to be at risk from having been exposed to possible infection then it is very important to get tested. If we are someone who feels that we are at risk of possible exposure to HIV then there is nothing wrong with having a healthy worry about the risks of transmission. It is likely that we either worry about exposure due to our personal lifestyles (you engage in unprotected sex), or because we are exposed to blood through the nature of our activities. Many people who work in the health sector or with ‗at risk‘ groups worry about HIV infection. Having this worry is a rational and totally logical worry and one that should not be ignored. If you are in 1 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives a job where exposure is likely then make sure that not only your employer, but also take appropriate measures to protect yourself against infection by employing the system of universal precautions. There are rumors and myths surrounding AIDS and it is important to remember that scenarios of deliberate infection are normally myths, often circulated in the media and made to look very legitimate. The problem with these myths is that no matter how much they are dismissed and exposed as hoaxes, the damage is done. The fear has already been instilled. It is extremely important to remember these are just myths though. They are not fact. AIDS is a relatively new disease that only came to the attention of scientists in the early 1980s. As a result, there is still much people do not know about the nature of HIV and AIDS. It is not uncommon to be afraid and scared of being infected with HIV/AIDS and for many this fear can be very debilitating and can completely take over and control your life. There are many reasons why HIV/AIDS can generate such a fear among people. Lack of knowledge about anything is often a likely cause for worry. A combination of little actual fact and sensationalist story writing is a potent cocktail for creating fear.There also seems to be an assumption that only certain people get infected which is not correct. The occurrence of HIV is higher amongst persons who practice sexual intercourse, and such groups are often looked down on or stigmatized in some societies. Because of this, an irrational fear can develop where you may believe that the virus will be passed on if contact with anyone from these groups. However, this is an emotional assumption which is not based on any fact at all. You can also develop a fear if you do something which is often deemed bad or wrong, like having unprotected sex with a person you do not trust. The guilt that can arise after doing something you think is 'wrong', may lead someone to expect to be cursed or punished, for example by contracting HIV. If you do have a constant worry about being infected it may be best to get yourself tested. This should then settle your worries and reassure you. If you are convinced that either you have been, or will be infected, despite what you have been told to the contrary, then it could be possible that your anxiety and fear of HIV is actually something that has nothing to do with HIV or AIDS. If you are suffering from anxiety, you can often have persistent concerns about harm or risk to yourself. This is a type of anxiety disorder that can cause you to become obsessed with germs or dirt, and in some cases HIV. This can result in certain rituals such as repetitive hand washing or the need to check things repeatedly, like how you can and cannot become infected. If you think you might be in this situation then try speaking to your doctor about it. Should you think that you may have been exposed to HIV, having a test and receiving a negative result (which means you are not infected with HIV), can stop the worrying. If the test is positive, there are a number of things that can be done to help cope with the result and lead a healthy life. If you test positive, you will at some point need to take antiretroviral treatment to slow down the 2 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives virus and maintain a healthy immune system. The longer you remain unaware of your infection, the less likely it is that the treatment will work. Doctors can monitor an HIV positive person‘s health in order to provide the relevant treatment regimen at the right time. If you are aware of your HIV status you can take steps to protect other people. You can practice safer sex and inform previous sexual partners that might have been at risk of infection. If you are thinking of starting a family, you can learn about ways to protect children from becoming infected with HIV through mother-to-child transmission. If you believe that you may have become infected, it is very important that you make contact with a doctor or health worker immediately, in order to discuss risk and make plans to test as soon as possible. If you consider yourself as engaging in risky behavior get tested at least once a year. In some cases a doctor may advise you to undergo an HIV test based on their own assessment of your health. Testing for HIV too soon after potential exposure to the virus may not give an accurate result due to what is known as the window period. A window period refers to the time during which HIV is not detected by tests even if the virus has entered the body. During this time, a test may give a ‗false negative‘ result. Different types of tests have varying window periods. To be sure of how long you need to wait, always discuss the nature of the HIV test with a healthcare worker before getting tested. If you are not sure of the date or time of your potential exposure to HIV, a healthcare worker will be able to advise appropriately on their HIV testing. Learning you’re HIV positive Scream, shout, cry, laugh, hide, run away, feel numb, scared, and lonely, relieved. How do you think you would react to a positive result before you actually had the HIV test? Were you right? Reaction to a positive result is different for everyone. Are you alone with HIV? Absolutely not. Globally, there are millions of people living with HIV and probably you are among them. It may seem you are the only one after being diagnosed, but really you are not. There are people out there, and many of them are dealing with similar issues – sexual health, relationships, disclosure, change etc. You may wonder what you will tell anyone, what the responses will be. Connecting with people who have been through similar experiences can help. Think about the benefits and do it early, do not delay. You deserve to have sex and feel good about it! Testing HIV-positive might mean making changes to how you have sex, but practicing disclosure and how to protect yourself and your partners from HIV and other sexually transmitted infections can make things easier. Over time, you will find a way of dealing with it that suits you, but it might be quite different to the way other people cope with it. Try and think about living - thousands of other people who live full and rewarding lives despite HIV, you can do it too. Your first action as a person living with HIV is making a choice - what to do next. The choices will not stop there; making the right ones to enrich and extend your life might play an increasing part in every new day. 3 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives No one ever predicted or suggested that any of this would happen. If you need time and space to think your situation through, take it. Whatever you are going through is natural. How to deal with this news is up to you. HIV is threatening your existence, so it is alright to be angry. If you are scared, express your fears. Do not be hard on yourself and do not force yourself to be strong if you do not want to be. Stress is natural and affects your emotions. It can help to deal with some situations if shared with others.However, excessive stress can cause physical symptoms; it can damage your immune system and you may fall ill. Take stock and find ways of managing stress in your life. Find ways to relax and refresh your mind. Listen to your body; if you are tired, rest and you will be better for it. Finding out that you have HIV may make you feel very angry and confused. Some people feel very sad, some go into shock and may feel numb, and others are very scared. Many people feel totally overwhelmed and helpless. It is important to realize that you are undergoing a crisis so these feelings are normal. Accept them, because feeling this way is part of the process of coming to terms with your HIV status. The strength of these feelings will lessen over time but a lot of people may sleep badly, not feel like eating, and feel tearful for a few weeks after being told they have the virus. If these feelings are still very strong after about three weeks you may need to seek professional help from a counselor or doctor. It is not cause for panic but cause for action. Have the will to live positively by looking at the future with hope. It diffuses away the feeling of self-condemnation or blame shifting for the situation. Always maintain hope through optimistic pursuance of dreams and aspirations. Then try to make an effort by taking an extra mile to help others. This will make you more needed and worthwhile. And do not go beyond the extreme trying to be a person what others want to be, it may not be easy to comfort everyone‘s opinion. Try as much as possible to always associate with people who think positively. And also do not let negative circumstances dictate the perception of your life. And where failure is registered, resiliently press on with the self-assurance that success is making its way. You can also develop a strong social network of friends, and let them be a shoulder to lean on for the support needed in both good and bad times. Value your friends for what they are because they may not leave-up to your expectations and always gather all your strengths by striving at a meaningful, fulfilling and productive life. Newly diagnosed with HIV If you have just been diagnosed positive you might be feeling upset, shock or anger and might be having trouble taking in the things you have been told. Do not worry. It is important to remember: Successful treatment means you can expect to live as long as anyone else. This treatment can be as simple as taking one or two pills once a day. Once your treatment is working properly you may only have to see a doctor once or twice a year. 4 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives You can have a relatively safe sex life – either with condoms or even without once your treatment is working properly. HIV positive parents can have HIV negative children. You might feel that your life has fallen apart and be feeling overwhelmed – but it is possible that becoming positive could only change your life by a small amount. Most of the things people take for granted about their lives can still apply to people living with HIV. All it takes is a bit of extra care to look after yourself. It is really important to go to a specialist HIV agent to sort out your medical care. You might not need to start treatment straight away but only an HIV doctor can work this out for you. If you are to wait until you are ill to seek medical advice it will be a lot more difficult to control your HIV and make you well. New drugs make it possible for the HIV infected person to live for years without getting AIDS. You can work or go to school, make friends, hang out, and do all of the things other people can do. You will have to take certain medicines every day and see your doctors pretty often, and may get sick more than other people do because your immune system is more fragile. Even though you may look healthy, you may sometimes feel scared, angry, unhappy, or depressed. You may feel afraid that people at work or school, or friends or family could find out and start treating you differently. If you know someone who is HIV positive, treat him or her just like any other friend. A positive diagnosis can be quite a shock. You might begin to question your future and start reliving your past sexual behavior. This is perfectly normal and it is natural to start thinking: 'What if?' and 'If only'. It might be worth getting some help to look after your mental wellbeing and begin to adjust. You might be thinking about who you can tell about being HIV positive - and who might find out. It is only natural to think about who can offer support during this difficult moment. Before making any decision, why not discuss it through with any health worker. All of this might seem like quite a lot to manage on your own, along with running the rest of your life. If so why not get in touch with Health Workers. A Late Diagnosis You might be carrying the virus and then recover from HIV infections naturally because your body kills the virus by thousands as soon as it discovers that there is an HIV invasion till you adjust to a state of living with HIV. Some people only find out they are HIV positive after the virus has started to make them ill. ‗Late diagnosis‘ means that you have tested positive for HIV after the virus has already begun to damage your immune system. If you are diagnosed at this point then you might feel overwhelmed by all of the information given to you, but remember that taking care of yourself is your number one priority. It is natural to look back over what might have prevented your infection but the most important thing now is to make sure you stay well. You may feel unwell because many people who receive a late diagnosis are characterized with symptoms of an opportunistic infection. Although this can 5 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives be serious and can impact your quality of life, you can work closely with your doctor to find the best combination of medication to help your immune system. You do not know how you will react to a positive diagnosis until you are in that situation, so take time to understand what is happening and ask your doctor or health adviser as many questions as you need to be able to understand your diagnosis and what to do next. HIV medication is very good and although your immune system will already have been damaged it can be possible to repair a lot of the damage the virus has done if you take special care of your health.Following your medication instructions is especially important if you are late diagnosed. Being told that you have HIV can be an emotional, life-changing event and will give you much to think about, but a late diagnosis usually means that you must adapt to your new situation quickly. There are steps you can take to ensure your general health is as good as it can be so that HIV cannot take advantage of your already-weakened immune system. It is also important to consider your sex life and how you can best protect yourself and your partner(s) from any further risks. HIV medication is very effective and if you were diagnosed before your immune system became too damaged you can expect your life expectancy to be almost the same as it would be without the virus. If you start treatment while your CD4 is still high you can expect to live almost as long as if you did not have HIV. This also means that you need to consider how to manage your health into your old age, as you learn to live with the inevitable effects of ageing in addition to being HIV positive. Living with HIV for a long time can present new challenges – for instance it might get harder to keep taking your medication as time goes on. There are tools that can help to simplify this for you. If you are struggling with depression or anxiety, seek help from any AIDS Service Organization and you will be able to get information on HIV/AIDS counseling or support. A healthy diet and an active lifestyle are important to keep your immune system strong and to ensure that you make it harder for a serious opportunistic infection to attack you. If you have not yet started taking any kind of drugs for HIV, you can help your body by eating a varied, healthy diet and taking regular exercise. Then when the time comes to start your medication, you will be in a great position for your body to handle it. Pediatric AIDS Some people born with HIV are told from a very young age that they have the virus, while others are not told until they are a bit older. The important thing is that you understand enough about HIV to face any worries and understand how to look after your health. You may be wondering what HIV means for your health, whether it is still OK to have sex or whether you can do all the things other people do. When you are born with HIV, this means that HIV was passed to you from your mother. This might have been while she was pregnant and you were in her womb. Or it may have been while you were being born or if you were breastfed. HIV has to get from one person‘s body into another. It is passed on through only a few body fluids: blood, sexual fluids and breast milk. Globally all pregnant women are offered an HIV test, because if you know you have HIV you can usually stop it from being passed on to your baby. Women who have HIV take medicine 6 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives whilst they are pregnant and doctors make sure they give birth safely to protect their babies. After the baby is born, it is given some HIV medicine as well and is fed with formula milk instead of breast milk. When you do all these things there is less than one per cent chance of the baby having HIV. If all these things are not followed, there is a higher chance of catching HIV. So sometimes it is just not possible to prevent HIV being transmitted from a mother to her baby. It can be that a woman may not know her HIV status when she becomes pregnant, and finds it hard to cope or has no way of accessing the medical help that she needs. If you were born with HIV you may feel sad or angry to know that it was not possible to stop your infection. Sometimes when people find out they are HIV positive they want to blame someone. These feelings are completely natural and understandable. If you find these feelings too difficult to deal with, you can contact any HIV Health Trainer or a nearby counselor. You can live a nearnormal lifespan if you have HIV. This means that, if you take your treatment correctly when you need to, you will live nearly as long as a person who has not got HIV. Being a child you might have just found out that you have HIV, or maybe you have known for a while. As you get a bit older, it is important to know more about HIV so that you can take care of yourself and know where to get help and support. You may feel mixed up about being HIV positive or you may feel sad, angry or confused. Or you may feel OK about it. Some children are told from a very young age that they have HIV and others are told when they are a bit older. It can be harder to find out when you are in your teens and it is good to tell someone when s/he is still young. However you feel, this is normal and you should not be worried. If you can, then tell someone about your feelings after all, a problem shared is a problem halved. When you are told you have HIV you might want to tell people - your friends, for example. Before doing that, it can be a really good idea to talk to someone at home or someone you like at your clinic about who you want to tell. Unfortunately some people can be unkind to people who have HIV, and once you have told someone you cannot ‗un-tell‘ them. It is important that one of your parents or providers talks to you about what will happen at school, church, or any health center. It might not be necessary to tell anyone at school that you have HIV, but if you have lots of time off for medical appointments it can be good for your parents or providers to talk to the head teacher. This is something you do not need to worry about as the adults looking after you should decide the best thing to do. If they do tell the head teacher, this does not mean the other teachers or children will be told - it is your private information. You might feel like you want to tell your friends but it is best to talk to the adults looking after you about this first. Accessing support for a child infected with affected There are places that can support children with HIV and AIDS service organizations have groups for children and teenagers with HIV or with an infected parent. This can be a really good place to talk freely about your HIV. The staffs who work there know all about HIV and are really good at talking to children about it. They also run special services for parents and providers so usually the whole family can go. If you are diagnosed with HIV while pregnant then you may need emotional support in coping with your diagnosis and information about transmission and treatments. 7 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives HIV/AIDS organizations provide support to people living with HIV and can offer you with a friendly advice and support. When you have HIV, it causes problems for your immune system, the part of your body that protects the body from illnesses and helps get better if you are ill. So this means that people with HIV are more likely to catch illnesses and infections. Your doctor will always look at your blood to find out how much of a problem is being causing by HIV. At some point you will need to take medicine every day to keep your immune system work well and keep HIV under control. This is a big deal for a lot of people because you have to take the medicine every day for life. Although this might sound scary, it can be helpful to think of the medicine as a good thing which is to keep you well. It is true sometimes people get side effects, meaning you might feel ill after taking it, but the medicine is getting more sophisticated and usually people find they can take it easily. When you have HIV one of the most important things is to take your medicine every day. This is so because it confines HIV under control and is not able to cause problems. If you are finding it hard to do this, it is best to tell someone at home or your doctor as there are things they can do to help with it. You might be thinking about when you grow up. Will you be able to have a boyfriend or girlfriend or get married? Can you have sexual relationships, and can you have a baby one day? The answer to all these things is yes! People with HIV can do all the things that people who do not have HIV can. It is really good to understand more about how sex works when you have HIV and this is something you will be able to get more support with when you are older. If you feel shy about this you can ask the nurse or doctor at your clinic. Having HIV does not need to hold you back. You can still travel, although there are some places where you cannot move to permanently. You can also have a career, although if you want to be a nurse or doctor there are a few restrictions on what you can do. You can still follow your dreams. Being a teenager or young adult, you might have always known you have HIV, or maybe you have just been told. Finding out about having HIV is a life-changing thing and it can take a while to sink in. If you were told when you were young you may only just be adjusting yourself to having HIV. First of all, having HIV does not mean you are about to die and people with HIV can lead a normal life and live nearly as long as someone who does not have HIV. Being a teenager can be a really confusing time and you might feel lots of different emotions. It is normal for teenagers to have mood swings, to feel angry, upset and to feel like you want to do your own thing. Sometimes it can be hard to cope with how you feel, especially if you find out you have HIV or you start to worry about it.When people find out they have HIV, even when they are adults, it can be a really scary time. It is even harder for teenagers and young adults. You might feel confused by how you feel and not know who to talk to. You may feel angry with your parents or with the doctors looking after you. All of these feelings are normal and it‘s OK to feel like this. It can take some time to work through these feelings and it is really important to talk to someone you trust, like an adult at home or someone who looks after you at your clinic. Sexual intercourse while carrying HIV For the people you have had sex with, it can be difficult to tell them, but they need to know so they can get the necessary help they need. Your local health centre may help you find these 8 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives people and tell them they have been exposed to HIV. If they have HIV, this may help them get care and avoid spreading HIV to others. It is very ideal also to tell people you are planning on having sex with. Practicing safe sex will help protect your health and that of your partners. If you are a man and had sex with a woman who became pregnant, you need to tell the woman that you have HIV, even if you are not the father of the baby. If she has HIV, she needs to get early medical care for her own benefit and her baby‘s health. If you suspect that you got an STD from your partner, encourage him or her to go for the test too. Even if most STD‘s are curable, your infected partner can pass it to you again either directly or indirectly. Having HIV does not mean that you cannot have sexual relationship, but it is important to understand the ways HIV can and cannot be passed on. The virus is present in sexual fluids so by using condoms you can generally prevent it from being passed on. Someone at your clinic will be able to explain how condoms work so you can use them confidently. You could talk to someone at home, at your clinic or an HIV Health Trainer for more information. However you may be feeling now, there is no reason that you cannot lead a normal life and live a near-normal lifespan. HIV is something that can be controlled with medicine. The most important thing is to try to learn about HIV, so that you can feel confident about looking after your health and happy about your future. If you discover that you are HIV positive while you are pregnant, taking antiHIV drugs can dramatically reduce the risk of passing HIV to your baby. Discovering that you are HIV positive while pregnant can be a shock. The higher your viral load, the earlier you will be advised to start taking treatment. If you do not yet need anti-HIV drugs for your own health, your doctor will advise to start taking them during the second trimester of pregnancy (this is between weeks 13 and 28). If your health is good, with a high CD4 count and a low viral load, and you are willing to have a caesarean section, you may take one drug only. Most women take a combination of three anti-HIV drugs. You will need to be on combination therapy, and have an undetectable viral load, if you would like to have a vaginal delivery. You will be advised to start taking combination therapy immediately if you are diagnosed late in pregnancy (after week 32). In this case, you may take a combination with a fourth drug. You should continue taking the drugs for the rest of the pregnancy and for a while afterwards. Your healthcare team can help with ways to make sure you take your drugs properly if you are not used to this, and with how to stop after the baby is born. If you need to be on treatment for your own health, you will need to continue taking treatment after your baby is born. Remember anti-HIV drugs are safe to use in pregnancy. There may be a slightly increased risk of giving birth prematurely or having a low birth-weight baby. Also, some babies do get anaemia (a shortage of red blood cells) but this is temporary. You can reduce the risk of HIV transmission further by having a managed delivery. The doctor will look at your viral load when you are 36 weeks pregnant and discuss options with you. If you have an undetectable viral load, it is usually recommended you have a vaginal delivery. You will need to continue with your HIV treatment during labor. If your viral load is detectable, but very low, the doctor will look at your particular situation and discuss options with you. If your viral load is reasonably high, you will be advised to have a planned caesarean section. If you find out you have HIV during delivery, or just after, then you will be given a dose of anti-HIV drug by injection and oral doses of other Anti HIV drugs. Your baby will also need to take a triple combination of anti-HIV drugs. After the baby is 9 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives born, you can talk to your doctor about whether you need to continue treatment or not. Breastfeeding your baby is not very vital as HIV can be passed on in breast milk. SERODISCORDANT RELATIONSHIP 10 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives A serodiscordant (sero-discordant) or magnetic relationship is one in which one partner is HIV positive and the other is HIV negative.This contrasts with seroconcordant relationships in which both partners are of the same HIV status (i.e. either are HIV positive or both are HIV negative). Serodiscordant couples face numerous issues not faced by seroconcordant couples, like facing a decision as to what level of sexual activity is comfortable for them, knowing that practicing safer sex reduces but does not eliminate the risk of transmission to the HIV negative partner. When your partner is HIV negative If you find out you have HIV, having a relationship may seem a problem, especially with someone who is HIV negative. But relationships are just as important for those with HIV as for everyone else. HIV might make them a bit more complicated, but thousands of people in mixed status relationships show that with a little thought and care these are among the strongest and most rewarding relationships. Whether someone tests HIV positive during a long term relationship or they are positive when the relationship starts, it is vital that each of you tests so that you can both be certain about your HIV status. It can be difficult for someone with HIV to say so, but not telling a partner can lead to problems later. The other person may be angry that they were not told sooner, or you may accidentally have unsafe sex – if a condom breaks, for example. Also, if a partner is not told and they subsequently contract HIV as a result of unprotected sex, this is unethical. There is still fear and lack of understanding about HIV; so many positive people know how it hurts to be rejected by partners or potential partners, especially if they turn the other down in an insensitive manner. Rejection happens to the best of us. Try not to take it personally – it is a reflection of their issues, not of you. Some people tell potential partners about their HIV status as soon as possible, so they do not invest feelings in someone who will later walk away. You can look at rejections as a way of sorting out the people who were never going to make you happy anyway. The important thing is not to hide away or give up hope! In a mixed relationship you might think a problem is HIVrelated but it might not be underneath. That is why it can help to talk to someone outside your relationship, such as a counselor. One of you might take on more of the worry, and if sharing this burden with your partner is not possible, talking to someone like a counselor (either together or on your own) can really help.If one of you is infected and the other is not, you both might worry about the HIV negative partner becoming infected. This is understandable, and these concerns are often strongest in the early days after finding out a partner has HIV. But worries can grow out of proportion to the real risk, putting a relationship under stress. Over time couples often get their concerns into proportion, and are then able to take precautions and enjoy a sex life with the least risk possible. So it helps to fully understand the risks associated with different types of sex. You might feel that HIV is a barrier to getting close, and that condoms get in the way. If you are the HIV negative partner you may start to feel that you are somehow immune from being infected by your partner.You may even feel that if you both had HIV it would result in more sexual intimacy, no more worries about getting infected and the chance to support each other with having HIV. But such thoughts store up problems for the future that will hurt your relationship. Two of you with HIV in your relationship will make things more complicated than just one. And someone who allows their partner to contract HIV could end up feeling angry with them. Talking to a counselor helps to work out ways of getting close sexually without risking HIV. 11 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Unprotected sex is not the only type of intimacy; deep and honest communication is a powerful way to get closer to one another. Using condoms is not easy, and feelings of love and passion can lead to unprotected sex. If this happens, you should not assume HIV has been passed on. It is never too late to go back to using condoms. After unprotected sex you might feel angry, stressed or lacking control. A counselor can help you work out why unprotected sex happens and how to avoid it.Keeping an uninfected partner HIV negative is important but unrealistic worries can interfere with your relationship. All evidence points to almost all people acquiring HIV through unprotected sex, mother-to-child transmission or sharing needles. You will worry less if you know the facts about the risks of different types of sex. During unprotected sex, HIV can be passed on in blood, semen, pre-cum, vaginal fluids and anal mucus; but not in urine, tears or sweat. But this does not mean that HIV transmission with an infected partner occurs at any time of unprotected sexual intercourse though it is real. If a condom is not used once (or even a few times) it does not mean that the other person must now be infected - only a test will tell. Both of you should talk to each other about what level of risk you feel like taking. Vaginal sex without a condom is a high risk but the risk is greater for uninfected woman than uninfected man though the risk for both is real. Condoms offer good protection against HIV - other types of contraception do not protect against it at all. Condoms for vaginal sex greatly reduce the risk but they can sometimes come off or break. The risk of getting HIV from performing oral sex on someone is very low. The risk from having oral sex performed on you is even lower and may be impossible. If you are worried about oral sex, using a condom or latex barrier is an option. Deep kissing is safe, and masturbating someone carries no risk if skin on the hand is healthy. Sharing a razor presents a small theoretical risk of transmitting HIV, but sharing razors is never advisable due to the possibility of transmitting bacterial and viral infections including Hepatitis B or C. HIV is not transmitted in saliva and regarding cuts and blood spills, an HIV positive person with an open wound should not be attended to by someone with an open wound themselves. Wounds can be washed with soap and warm water. Antiseptic is useful for preventing all sorts of infections but is not necessarily required. Lastly spilt blood can be cleaned with hot water and normal household cleaning products. The higher someone‘s viral load, the more HIV is in their body fluids, meaning a greater risk that the virus will be passed on during unprotected sex. HIV treatment usually brings your viral load down, often so low that it is classed as ‗undetectable‘. This does not mean that all HIV has gone – it is still there but in amounts too small to detect. If someone is on HIV treatment, there is an extremely low risk of them passing HIV onto a partner through unprotected vaginal or anal sex as long as: Neither partner has an STI, and The HIV positive partner has had a stable undetectable viral load for at least six months. Condoms are still the best way to prevent the spread of STIs. Before you make any decision about not using condoms, get advice from your HIV doctor or nurse. Try talking to your partner and agree whether your relationship will be monogamous (no sex outside the relationship) or ‗open‘ (sex with others allowed). 12 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives There are risks in not discussing it and assuming that your partner agrees with you. If you start a relationship when you are all HIV negative and later on learn that one of you is infected, the infected partner will be presumed to would have had sex outside marriage.Both monogamous and open relationships can bring benefits and challenges. For example, some couples in monogamous relationships say they enjoy feeling both physically and emotionally committed to only one person. However, they may feel frustrated if they have a higher or lower sex drive than their partner. Whereas other couples in open relationships say they enjoy the sense of freedom and variety it can bring, but it can also highlight any feelings of jealousy or insecurity within the relationship. Mutual trust and honest communication are vital in both monogamous and open relationships. If you both agree to be monogamous it is important that you discuss what would happen if one of you broke this agreement. If either of you feels you must hide the fact that you have had sex outside the relationship, it can seriously threaten the relationship. One advantage of monogamy is that sexually transmitted infections (STIs) such as syphilis, herpes, chlamydia, gonorrhea and hepatitis C can easily be checked in the relationship. If one of you has HIV, STIs can be harder to treat and, until they are treated, your HIV viral load increases. This means that there is more HIV in the positive partner‘s blood, semen, pre-cum, vaginal fluids or anal mucus, making it more likely that HIV will be passed on. If you have sex outside the relationship, condoms make it less likely that you will pick up other sexually transmitted infections (and give them to your partner). But some can be passed on despite using condoms and through oral sex. The risk of a person living with HIV, who is taking effective antiretroviral therapy (ART), passing HIV on to sexual partners through vaginal intercourse is extremely low, provided the following conditions are fulfilled: There are no other sexually transmitted infections in either partner The person who is HIV positive has a sustained plasma viral load level below 50 HIV RNA copies/mL [the limit of detection] for more than six months and the viral load is below 50 copies/mL on the most recent test. When your partner is HIV positive The fact that you both have HIV is not enough to build a relationship upon and everyone responds to their HIV diagnosis in their own way. It is also not a good thing to think that only other HIV positive people would be interested in you. Thousands of people are in happy and safe mixed relationships. But some people prefer to have relationships with other HIV positive people. It might seem simpler and feel more comfortable when a partner knows what it is like to have HIV. There are also no worries about infecting the other person, although there is the issue of reinfection to consider. And you might see no need to use condoms, which could be important to you. Re-infection, also called ‗super infection‘, is when you contract another different strain of HIV. If the new strain is resistant to HIV drugs, it may also affect your drugs from working or limit the therapy you take in future.This can make you sicker faster if the new strain is more aggressive than the strain you already have. If you have HIV you need to find out as much as you can and make your own decision. You are more likely to re-infect others if you have a detectable 13 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives viral load, and it is more likely the higher your viral load is. The likelihood of being re-infected by someone can be determined by: whether or not your viral load is undetectable how long you have had HIV Whether you are taking medication. Compared to the risk of re-infection, picking up a sexually transmitted infection from having unprotected sex is much more likely to happen. You might think that once you have HIV the worst has happened, but continuing with unprotected sex brings the likes of infections such as herpes, syphilis, gonorrhea, chlamydia and hepatitis C. These STIs can interfere with HIV treatment and make you more ill - this is called co-infection. You and your partner should talk to each other and agree whether your relationship will be monogamous (no sex outside the relationship) or ‗open‘ (sex with others allowed). There are risks in not discussing it and assuming that your partner agrees with you. Some people who think they are in a monogamous relationship find out that their partner has had sex with others. Both monogamous and open relationships can bring benefits and challenges. For example, some couples in monogamous relationships say they enjoy feeling both physically and emotionally committed to only one person. However, they may feel frustrated if they have a higher or lower sex drive than their partner. Some couples in open relationships say they enjoy the sense of freedom and variety it can bring, but it can also highlight any feelings of jealousy or insecurity within the relationship. One advantage of monogamy is that no sexually transmitted infections (STIs) can come into your relationship. If you have HIV, an STI can be harder to treat and, until it is treated, your HIV ‗viral load‘ increases. Infections that can come into an ‗open‘ relationship include syphilis, herpes, chlamydia, gonorrhea and hepatitis C, a serious liver infection caused by a virus that some people get from sex. There is no vaccine for hepatitis C, it can cause serious liver problems, including cancer, and treatment can be difficult and unpleasant. Re-infection with a different, more damaging strain of HIV is also possible although it is not clear how often this happens. Using condoms with people outside your relationship will make it less likely that you will pick up infections (and give them to your partner) although some STIs can be passed on despite using condoms and through oral sex. Talking to your partner Want to get something off your chest with your partner? Instead of attacking or withdrawing, when you talk to them, fill in the gaps to this three-part formula: Say what it is they do that you don‘t like. Be direct - but not accusing. Avoid just saying 'you do this', 'you make me feel this.' That makes them feel attacked; chances are they will become defensive (by attacking back or withdrawing). Tell them the effect of what they do. Use 'I' statements e.g. 'I feel hurt/angry/frustrated etc. When you do this, keep the focus on how you feel, not what you may be thinking about them. This explains to them why their actions bother you, hopefully without them feeling personally attacked. Be constructive. Bringing a problem out in the open is good. Saying what you would like to happen instead is better. For 14 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives example: 'When you talk about how you fancy other people, I feel insecure and angry, so I would like you to try and not tell me who you fancy. Tips on listening: We listen best with our mouths shut! We listen with our faces, not just ears – look them in the eye. It is hard to really listen if you are doing other things. Interrupting is a sign you are not listening. Asking questions will help you to understand their point and makes them feel like you are hearing them. Insults and changing the subject are ways of avoiding what they are saying. Matching their complaint with one of your own is not helpful. Try not to dismiss what they say by using phrases like 'that‘s stupid', 'you must be mad', 'yes, but' etc. After saying how you feel ask them how they feel and what they would like. It is a good idea to talk when you will not be disturbed, you are both relaxed and in a good mood. Couples often have different ways of dealing with life - this can be part of the attraction – and part of the problem. In a relationship there's often: The worrier and the one who thinks there is no need to worry (or show they're worried). The talker, who likes discussing the relationship, feelings, and the future and the one who does not like talking, The sociable one and the one who likes time on their own. Maybe you recognize yourself and your partner in this or can think of other ways in which you both are different. One of the secrets of a happy relationship is learning how to deal with these differences - especially if being in love makes you want to be the same, not different. The trick is to find a balance both of you can live with and to share any stress. Later you will see examples of how different ways of handling things can cause problems - and how to get over this. Feeling of blame after contracting HIV An HIV diagnosis is a big shock, and people deal with it differently. It is common to experience feelings of blame, and these are completely natural and understandable. You might feel that you are in some way to blame for contracting HIV, and that perhaps you did something wrong. For some people these feelings can be overwhelming, and it may feel like they will never go away. Blaming yourself excessively over a long period of time can negatively affect your confidence and self-esteem. Although it can be useful to understand why you put yourself in a risky situation and what you might do differently in the future, try not to be too hard on yourself. These feelings are completely normal, and will get better with time. If you have told your family or partner about your HIV diagnosis you may feel to blame for causing them worry. You might feel that members of your family or partner blame you, even if they have not said so. 15 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Or it might be that you have directly been blamed for causing them concern, which can be very difficult to cope with. It may be helpful to try to distinguish between feelings of blame and your own guilt, and to talk about these feelings openly with them. Immediately after a diagnosis some people feel very angry, and want to blame whoever infected them with HIV. For other people these feelings might come sometime after diagnosis, or not at all. This is likely to depend on how you contracted HIV, and from whom. Although this can be a normal part of accepting your diagnosis and the feelings will fade, for some people these feelings of anger and blame can be hard to get past. In this case it may be helpful to consider whether it is too difficult to accept your own part in how you contracted HIV.As a parent, you may be concerned about whether HIV will affect your relationship with your child. If they are HIV positive, you will also be concerned about how the virus will affect them. Talk to your child about HIV and answer any questions that they raise, whenever they raise them. Reassure your child that with treatment someone with HIV can live nearly as long as someone without HIV. There are measures that can be taken to reduce the risk of passing HIV onto your child. Ensuring your child is not put at risk of HIV infection does not mean you should keep them at a distance. By all means, you should feel free to cuddle them, kiss them and generally show them the love and affection that you have for them. As the child gets older, you may feel ready to tell them that you are HIV positive. They may be shocked or upset by the news or may not be able to keep it to themselves, and this could cause problems for all of you. Whether you have just told your child about HIV or whether they have known they are positive for a while, it may also leave them feeling sad, angry or confused. They may be wondering what this means for their health, whether they can do all the things other children or young people do and whether they will be able to have a boyfriend or girlfriend. Some parents also find that their children blame them for their HIV status. Again, clear communication about the reality of living with HIV will help reassure your child. Many people find that their community of faith is supportive during hard and difficult times in life. Your diagnosis with HIV may at times be associated with these types of feelings. Continuing to participate in your community of faith can give strength, courage, encouragement and feelings of hope. Unfortunately, some faith groups find HIV and sexuality difficult topics to discuss. As with any group of people, there runs the risk of stigma and discrimination when a subject cannot be addressed openly. Stigma and discrimination are difficult burdens to bear, and may lead to withdraw from your faith community or become silent. Many people living with HIV often do not disclose their status within their faith community because of fears of being treated differently. As a result, faith communities may wrongly believe that everyone feels welcomed and safe.Nevertheless, do not be pressurized to disclose your HIV status until you feel comfortable with it. Although some faith communities‘ hold views of stigma and discrimination, this is certainly not true for all faith leaders or communities. Should you choose to be part of a faith community, it is important to find one where you do feel welcome and where you can disclose your HIV status without the fear of being rejected, discriminated against or stigmatized. 16 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives HIV DISCLOSURE If you are HIV positive, choosing who to tell can be a difficult decision and it is important to think about how different people may react being told that you have been diagnosed with HIV. You may feel like telling people soon after you receive your HIV diagnosis - but once you have told someone you cannot ‗un-tell‘ them again. It is important to think about how different people may react to being told that you have been diagnosed with HIV. Things to think about include: Why should I disclose my HIV status to this person? Are there any benefits to telling them? Are they effective at discussing emotional issues? What will I do if they don‘t react in the way I expect or hope for? Can I trust them not to tell other people? Telling someone that you have HIV can be a very positive experience and will hopefully mean that you have someone to offer you support. But you have to be prepared for different reactions. Some people may become upset at your news, especially if they do not know much about HIV. Once people realize you can lead a normal life with HIV they may be better able to support you. Unfortunately some people may not react in the way you hope and may be unkind or discriminatory. If this happens there is support available such as counseling or support groups. Before disclosing it can be helpful to consult a healthcare professional at your clinic. Whether to tell your friends about your diagnosis will depend upon your relationship with them. Often, confiding in a good friend can be an invaluable source of support. Friends can be as close as your family, or even closer. If you have not shared much personal information with friends in the past you might not want to tell them about your status. But if there is someone who has previously been helpful, this person could be supportive now. Is there someone who accepts and loves you, who respects your privacy and is a good listener as well as being practical, sensible and reliable? It is important to think about how they might react. You may have friends who are already knowledgeable about HIV and others who know less; so it is important to get prepared for a reaction you were not expecting. Deciding which friends to tell might also depend upon culture. In some communities HIV is something which is hard to talk about because of the fears people have about it or the myths they believe. In addition, friends from some cultures may have incorrect information about HIV and treat you differently or unkindly. If you think your friend might react like this, it may be easier to get support from HIV agencies or a peer support group. Sometimes people may become upset and try to exaggerate worries about what your diagnosis means for your health. They may also be concerned about the risk of transmission to them. It is also important to think about the timing of your disclosure. Someone may be hurt to find out about your HIV diagnosis after other people have been told but in other cases it will do no harm for them to find out later. Disclosure: Self-assessment Who is told, and how, can take a bit of thinking through. Telling close friends and family can provide enormous relief and support, but it can also cause problems. Different illnesses can bring particular worries about who to tell and how. At first you may not tell anyone, not even your partner, and your family still has no idea, but you may want your friends to know, even though actually telling them is so difficult. You find yourself sounding out their views, how much they 17 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives know about AIDS; whether they realize you‘re not a threat to them, how discreet they will be. Do people really need to know? Do they need to know immediately? Unfortunately, it is a fact of life that there is a lot of stigma attached to the HIV diagnosis. Who to tell and how to unleash will take a bit of thinking through. There can be advantages to talking openly about your status, but it could cause you problems. Be careful who totell, do not rush off and tell everyone straight away - you might regret telling them later. Do they really have to know? If so, do they have to know now, or can you leave it till later? But sharing the news of your positive status with the right people can strengthen personal relationships and help you feel less isolated. Probably the first thing that someone you tell will think about is how you got infected. If they are kind enough not to actually ask, be careful that they are not making assumptions about you. For example, in some communities an HIV positive woman is presumed by many people as a prostitute. Talk to people you can trust, but try to make sure they will respect your need and right to confidentiality on this issue. Try to make sure whoever you discuss with is sympathetic to your viewpoint, someone who will not judge you on your lifestyle, sexuality or being HIV positive. This might be difficult, and though you think you know who your friends are, telling others about this might either confirm or damage personal relationships. Just as your HIV positive result was possibly a big event to happen in your life, if you are in a relationship the news will also have an impact on your partner. Consider the highly emotional aspects of revealing your status and, if possible, avoid the "heat of the moment" to reveal all. No two relationships are the same, so it is difficult to give advice in this situation. If you are going to tell, do not delay it for too long. If they are negative, or untested, they might resent you keeping it to yourself, adding unnecessary worry about any risk of infection they might have been in. Of course, if you discussed the issue before you were tested, talking through the result might be easier. If you are in a serious relationship, telling your partner is one of the first things you will probably think about. Many turn to their partners for comfort and support. However, you may lose your partner‘s love when you disclose. It is normal to feel nervous, embarrassed, or even fearful of your partner‘s reaction. Since you and your partner most likely have a sexual relationship, you do need to let them know that they may have been exposed to HIV and should get tested. Also, you now need to think about practicing safer sex to avoid contracting another strain of HIV. Disclosing your HIV status can put a strain on the best of relationships. It is important to think about when and how to disclose, but keeping the information to yourself for too long is probably not a good idea. It may be helpful to getting some professional counseling. Be aware that women are at risk for violence when disclosing their HIV status. If you are worried that your partner may become violent, think about having the discussion with another person you trust present: a therapist, an HIV advocate, or a health care professional. You will probably need a lot of time to work this one through. Whether you tell previous partners depends on lots of things, including whether you are still involved with them now, what they know about HIV, whether they are HIV positive themselves (and how do you find out?), and whether they need to know, perhaps because you had unsafe sex with them before you knew your status. How will either of you deal with worrying about who gave whom what? If you are dating, you have to face the question of disclosure with each new relationship. You may prefer to get the 18 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives issue out into the open immediately. Or prefer to wait and see if the relationship is going to develop beyond casual dating. Although you may know about safer sex and how HIV is transmitted, fear and stigma are realistic. Your HIV status may prevent some from wanting to see you, while others may not be put off by the information. In most cases, sharing your HIV status is a personal choice, but in case of sexual relationships, it can be a legal requirement. It is best if you disclose your status prior to having sex with anyone new. Non-disclosure of HIV status in a sexual relationship can lead to criminal charges whether or not your partner becomes infected with HIV. In most countries, it is mandatory that you disclose your HIV status before knowingly exposing or transmitting HIV to someone else. Penalties vary from country to country. In many countries, you can be found guilty of a felony for not telling a sexual partner you are HIV positive before having intimate contact. If you have children, you may have additional concerns about whether to tell them your diagnosis and whether they need to be tested too. There are a number of reasons why it is important to talk to children. Children tend to sense when something is wrong and not talking about a serious illness in the family may suggest that it is too terrible a subject to be discussed. Children also have an ability to deal with the truth which adults sometimes underestimate. Not knowing things can make them feel anxious, and even sad truths will be better than the uncertainty of not knowing what is happening.Explain to a child that you are ill and tell them generally what you think may happen. You do not have to tell them everything at once; you can give a bit of information at a time. Generally it is best not to offer more information than is asked for, and to let them ask questions at their own pace. If you do not know the answer to something they ask, you can say that you do not know. As a parent you may well need to talk to someone with experience in this area - your clinic or local AIDS service organization, or other parents with HIV might be able to help. Disclosure could be when you find out who your friends really are. Carefully deciding who to tell might teach you how to deal with telling others. Common reactions are: shock, pity, disbelief, helplessness, or endless questions. Some people may decide they do not want to know or see you anymore. But your real friends will carry on as before, liking and loving you for who you are, supporting you through any problems you have. Remember, being HIV positive does not stop you from being the person you were before. You do not have to tell everyone that you have HIV. However, it is important that you tell your current and past sexual partners and anyone you have shared needles with. This way they can be tested and seek medical attention if required. If you are afraid or embarrassed to tell them yourself, the health department in your area can notify your sexual or needle-sharing partners without even using your name. You also need to tell your health care providers to ensure you receive appropriate care. Your health care provider may ask how you might have got infected to determine if you are at risk for other diseases, such as hepatitis C for injection drug users and other sexually transmitted diseases (STDs) for women infected through sex.No two families are the same either. If your immediate family is supportive and loving, your news will bring them anxiety and pain, but could also strengthen your relationship. 19 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives The alternative is that some members of your family will shun you. If you are a catholic priest do not assume your church (followers) does not know if you have not come out to them. They may have chosen to ignore "that part of your life", perhaps inventing their own excuses. Not telling parents could eventually make them even more upset. You know your family better than anyone else does, it might be a gamble, but it is your decision. Your family and friends may want to help, but in many cases they do not know what they can usefully do, and you may need to help them to do what is useful to you, as well as sometimes to do things that are useful for them. Exactly what this is depends on you and your particular circumstances. For some people talking to parents can be as important as it is for other people talking to their children. You may not have seen your parents for some time; you may have a partner or other important people in life that your parents may not know about. But sometimes those close to you will surprise with how supportive they can be. Some people prefer to go on their own to see their doctor or other health professionals, but you may find it helpful to have someone for company.Move with someone who can write down the stuff that gets said and can make sure that all of your questions are asked. It is good to have someone who can help remember later and can help remember the questions that you wanted to ask. Practical assistance can also be useful. It can be very hard to ask for help, so practical assistance is wonderful. Offer to go to the supermarket, or help with gardening or cleaning.You may sometimes need to tell people what does not help. ―Be honest with people - I hate it when people tell me: ‗It will be alright.‘ I know they are only trying to reassure themselves, but it really does not help me! Ride with it and remember that everyone has bad days. Ask for help and support if you need it.‖ And when people say that they understand how you feel, you may need to tell them that they do not. As put by one client; ―I do not think even those close to me really understand how this feels to me, and they are sometimes shocked at my wicked sense of humor which comes as a result of living with the disease. I need to make a joke of it, and people cannot quite understand that, but it is a way that I cope. Who knows what tomorrow will bring?‖ Disclosing your HIV status can be stressful. While you may receive love and support from some people you tell, others may not be as accepting. Try to find someone that can support you through this difficult process. If you have not told any family member yet, turn to your health care provider, social worker, counselor, or AIDS service organization (ASO). Disclosing your HIV status has an effect on the people you tell. People react differently to the news. Your friends and family may immediately embrace you and accept your diagnosis. Others may react negatively or need some time to process what you have told them. Just like you, people you tell will need support too. Try to leave them brochures or books about HIV that they can look at later. Give them the addresses of persons that provide information on positive living. Also let them know who else is aware of your status, so that they can approach each other for support. Disclosing to your Family members If you have been diagnosed with HIV you may be thinking about telling family members but your decision will depend on the relationship you already have with them. 20 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives If you have a relative you are close to, who has been helpful in the past, they could be supportive now. Are they someone who accepts and loves you, who respects your privacy and is a good listener as well as being practical, sensible and reliable? Family members may have incorrect information about HIV and treat you differently or unkindly. If you think your family might react like this it may be easier to get some support from an HIV organization or a peer support group. If you do decide to tell someone in your family, it might be useful to have some leaflets you can show them - people may have exaggerated worries about HIV and having something to read may be reassuring. You may worry that if you become unwell and have to be admitted to hospital, the medical staff might disclose your HIV status to your relatives against your will. Generally professional doctors do not disclose your status – they might explain that you have a condition like pneumonia, for example, without mentioning your infection.But in some situations medical staff might encourage the disclosure of your status so you can get support from your family, but they will not force you to do so. Often people do not understand the ways HIV can be passed on, or your relatives may feel worried and upset about your health. They will be reassured to know that you are getting good care from the clinic and that you know where to get support and how to take care of yourself. If you are a parent you may be thinking about telling your children that either you or they have HIV. They may be shocked or upset by the news or may not be able to keep it to themselves, and this could cause problems for all of you. It is a good idea to get some support before disclosing to your children from a family support worker or an HIV organization that works with families with children. Disclosing to sexual partners If you have just been diagnosed with HIV you will be thinking about whether to tell your partner, whether they are long-term or casual. Telling a sexual partner about your HIV diagnosis can be stressful especially as there may be concerns about HIV being passed onto them. Your partner may need to have an HIV test and might have to wait until a window period has passed to do so. You may be in a long term or casual relationship or you might just have sex with someone once.In each of these situations the decisions you make about disclosure will be different. It is helpful to think about the different reactions partners may have to hearing about your HIV diagnosis. Hopefully your partner will be supportive but it is always possible that they may react badly. Some people face particularly difficult situations. You may live with your partner and be worried about losing your home, for example, or you may be worried about domestic problems or violence. There may also be legal reasons to tell your partner. One benefit of telling sexual partners about your status is that if they are exposed to HIV when you have sex (if a condom breaks, for example) they can take treatment that may prevent them becoming HIV positive. Whether you tell previous partners can depend upon a number of factors such as what your relationship was like and whether the kind of sex you had posed a risk of transmission. Telling previous partners can be difficult and you can ask staff at your HIV clinic to contact your ex-partners and sexual partners for you. They can do this without giving any of your details away. When thinking about telling a casual sexual partner about HIV it is worth thinking about why you want to tell them. The reasons you have for telling (or not telling) may depend upon the kind of relationship you want to have. For example, do you plan to see the person just once or 21 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives are you hoping for a longer relationship? It may also depend upon the kind of sex you want to have. If the risk of passing on HIV will be very low, some people see no reason to disclose their HIV status. Others tell partners to make it easier to make informed decisions together about sex, while some people do so because of the law which may vary from one country to another. If you have just met someone, you might not feel that you know enough about them to anticipate their reaction, or to judge whether they will respect your privacy. You might meet the person somewhere like a bar or party, where it feels out of place to talk about HIV. Some people prefer to talk about their status in a more neutral environment, at a later date or wait until they have got to know the person better. Other people drop HIV into the conversation very early on, in a casual and matterof-fact way, so that if the other person cannot accept it, no time is lost. Disclosing to Doctors/General Practitioners (GP) It can be sensible to tell your GP that you are positive because, when treating you or prescribing medicines, they need to know about other health issues and medicines you take. Doctors cannot refuse to treat you because you have HIV. Doctors cannot talk about your health with your family, friends or anyone else or show them your medical records; however sometimes they may need to disclose your status. Medical information is usually shared within the healthcare team, for example, and with other health workers treating you. But you can ask your doctor not to do this and, unless it would put another worker in danger, the doctor must respect your wishes. An example of a situation where a doctor may need to let another worker know about your status would be if a nurse had taken blood from a positive person and had accidently pricked themselves with the needle. A doctor may have to reveal medical information about you if forced to by a court or requested by the police, or if they think somebody‘s life is at risk. Your doctor will probably note your status in your medical records.It is unethical for dentists to refuse to treat someone with HIV. There is no risk of HIV transmission during dental treatment if standard sterilization and hygiene procedures are taken. If you experience discrimination, you can report it to your nearest authority. The benefits of telling the dentist about your status is that they can check for HIV-related gum problems, and ensure that any medicines they use do not interact with anti-HIV drugs. Disclosing to teachers or fellow students If you are the parent of a child with HIV, you may be considering whether or not to tell a teacher at their school. Or you may be a student with HIV thinking about telling a teacher, tutor or lecturer at your school, college or university. If your child is HIV positive, you may be unsure of what is in place to protect your child's confidentiality at school. This can also be useful if your child does not have HIV but sometimes stays home from school because one or both of their parents is positive and needs care. A child who is infected and affected by HIV has the same right as any child to attend school and access same education. You are not obliged to disclose that your child or a family member has HIV. If you do decide to disclose your child‘s status, only two teachers need to know about it. This would usually be the head teacher and another member of staff chosen by you and your child. It is good practice for schools to have procedures in place if a parent tells them a pupil is 22 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives HIV positive.Any medical information you disclose should be kept confidential. It can be useful to tell the school if your child has to have frequent time off for medical appointments or to care for other family members. It can also be a good way to ensure your child has some extra support and religious care if they need it. Very young children may need a teacher to monitor their anti-HIV medication. If you are at school or are about to start college or university, you may also be thinking of disclosing your status to a teacher, tutor or lecturer. This may be a good idea if you frequently absent because you are unwell or because you care for a family member. If your own status or a family member‘s HIV impacts on your education, it may be worth telling someone who can offer you support to complete your work and attend college as much as possible. The essence of disclosure Most people mainly women prefer to disclose their status to close friends and family members who they trust. For many, telling those closest to them leads to both emotional and practical support. You may become more public and use your own stories to advocate for others within the government or in the media. You may also disclose for educational purposes to neighbors, community and religious groups, schools, other HIV positive people, or healthcare providers. Many persons find a sense of purpose and increased self-esteem by telling their story. You may want to consider how much of your story you are ready to tell. Many people will ask how you became infected. If you decide not to share that information, have a reply ready such as, ―does it really matter?‖ or simply state that you are not ready to talk about that. For a parent considering telling their children, it is important to ask yourself why you want to tell them: Will they be angry if you keep a secret? Do they suspect something? Are you sick? Children can react to news of HIV in the family in many different ways. Older kids may be upset that you kept a secret from them. Younger children may just want to go back to their toys. Partial truths can be helpful when telling children. You may decide only to tell them as much as you consider appropriate for their age. Do not forget that kids need support too. If you can, give them the name of another adult they can talk to, perhaps an aunt or grandparent. 23 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives HIV AND PARENTHOOD Many people with HIV have a strong desire to have children – and, indeed, many HIV-positive people are parents. Your HIV status does not mean that you cannot think about having a family. With the right care, HIV positive women can give birth to children without passing on HIV.There are a number of techniques and fertility treatments that can allow people who are HIV-positive to become pregnant or father a child safely. For example, men who are HIVpositive may be able to father a child using a technique called sperm washing. Another option is donor insemination. Women who are HIV positive and have an HIV-negative partner can use self-insemination to become pregnant. Talk to your healthcare team about your situation and the possibilities available to you. Adoption or fostering might be another option. Having HIV does not automatically mean you cannot adopt, but your health and circumstances would be assessed before you could apply, to ensure the child‘s long-term needs can be met. Similarly, you can adopt or foster a child if you are single, or any type of sexual orientation, as long as you can show that you can meet a child‘s needs. Thinking about pregnancy With good medical care and HIV treatment, HIV-positive women can give birth to children without passing on HIV. If precautions are not taken, there is a risk of a mother passing HIV on to her baby in the womb, when the baby is being born or during breastfeeding. But many women with HIV give birth to HIV-negative children.With the right treatment and care, only one baby in 1000 is likely to be born with HIV. If you are thinking about having a baby, but not pregnant yet, it is important to talk to your doctor first, so that he or she can check if you are in good enough health to have a baby safely. Staff at your The HIV clinic can also guide about how to get pregnant without putting your partner at risk of infection or reinfection. It is worth telling your HIV doctor or nurse that you would like to try to become pregnant to get the best advice: Pregnancy will be easier if HIV is not causing serious health problems at the moment. If you have a sexually transmitted infection, or any other infection, you need to wait until it has been treated There are ways to get pregnant that limit the risk of passing HIV onto your partner, if he is HIV negative. It is important to follow the advice for all women who are planning pregnancy. This includes stopping smoking, eating healthily, avoiding alcohol, taking care over food poisoning and taking folic acid supplements There are some anti-HIV drugs which you may want to avoid during pregnancy – your doctor can tell if it would be safer to change your treatment. However, these are drugs that are very rarely used now, and the chances are you will not change your treatment. Some women find it difficult to become pregnant, and there can be medical reasons for this. If you are not pregnant after six months of trying, go back to the doctor. There may be tests and treatment that could help.Women usually get pregnant by having unprotected sex with a male partner, but this is not always the best way when one or both people have HIV. Talk about your options with your healthcare team if you are thinking of having a baby. If one partner is HIVnegative and one has HIV, if you have unprotected sex, there are two risks to be aware of: Passing on HIV to your partner Sexually transmitted infections 24 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives An untreated infection could have serious consequences for you and your baby, so both you and your partner should check that you do not have any infections before having unprotected sex. If both you and your partner have HIV, there are two risks associated with unprotected sex: Reinfection with a different strain of HIV. Sexually transmitted infections If you are an HIV-positive woman, and your partner is HIV-negative, you can use selfinsemination to get pregnant. If you are an HIV-positive man, you could consider a technique called sperm-washing. You can use this process if your partner is HIV-positive or HIV-negative. Some couples do have unprotected sex to get pregnant, usually only on those days when the woman is fertile. But this is dangerous because there is still a risk of transmission of HIV to the negative partner, or reinfection, even when someone is on effective treatment with undetectable viral load. If you are thinking about having unprotected sex, it is very important that you and your partner discuss your options and the risks with your healthcare team before making a decision to have unprotected sex. There are other options, using other sorts of fertility treatment such as donor sperm. Talk to your healthcare team about these, and whether you might be able to get them. Adoption might be another option. Having HIV does not automatically mean you cannot adopt, but your health and circumstances would be assessed before you could apply. Self-insemination This technique is suitable for HIV positive women whose male partner is HIV negative and is a simple process that can be done at home. You will need to make sure that neither you nor your partner has a sexually transmitted infection before trying it. This is best done when you are ovulating (your fertile period). It is best to try the technique several times during your fertile period. 1. Your partner will need to ejaculate into a container. The container does not need to be sterile, but it should be clean and dry. 2. Next you will need a plastic syringe. Your HIV clinic can provide them, or you can buy the kind used to give medicine to babies at a chemist. 3. Wait up to 30 minutes for the semen to become more liquid. 4. Draw back on the syringe once with nothing but air, then push the air out again. Now point the syringe into the liquid and slowly draw it back to suck in the semen. 5. Get into a comfortable position lying on the bed with your bottom raised on a cushion. 6. Either you or your partner can now slowly insert the syringe as far into the vagina as possible. 7. The area to aim for is high up in the vagina, towards the cervix. 8. Slowly squirt out the contents of the syringe. Gently remove the syringe. 9. Try to remain lying down for the next 30 minutes while the sperm makes its way through the cervix. Some semen may leak out but this is normal, and does not mean that it did not work. Another alternative method is for you and your partner to have sex together, using a male condom. After sex, withdraw the penis from the vagina with the condom still on. Then take it 25 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives off, and use a syringe to transfer the semen to the woman‘s vagina. If you use this technique, make sure that the condom does not contain a spermicide. The healthcare team at your clinic will be able to provide syringes and information on how to calculate and recognize when you are ovulating. Sperm washing Sperm washing could be an option for couples, who are both HIV-positive, or where the man is HIV-positive and the woman is not. It is a technique used to separate the seminal fluid, which contains HIV, from the sperm, which do not contain HIV. The remaining sperm are placed in a substitute fluid and inserted into the woman‘s vagina when she is ovulating (the time when women are most fertile). Although it cannot be absolutely guaranteed that no HIV remains, sperm washing is very safe. Your doctor or GP can give you more information or answer any queries you may have regarding sperm washing. To be eligible for sperm washing you will need a referral from your doctor with details of your viral load and CD4 count. There may be other eligibility criteria, depending on which clinic you go to. If you have difficulty in conceiving or if your partner has a low sperm count, you may want to investigate IVF (in vitro fertilization) together with sperm washing. You can ask your doctor for a referral to an assisted conception unit where you should receive the same service as couples who are not HIV-positive.The success rate for sperm washing varies depending on technique used to implant the sperm. You could also consider the option of using donor sperm. Contraception Contraception is a way to prevent pregnancy and to plan pregnancy for a time when you are ready to have a child. There is a wide range of methods to choose from. Most contraceptive methods are used by women. Condoms are the only contraceptive designed for men to use. Some contraceptives need to be used carefully to be effective. Condoms and Femidoms (female condoms) will only work if you remember to use them and you use them properly each time. If you are taking the contraceptive pill, you need to remember to take it every day.Condoms and Femidoms are the only contraceptives that will also reduce the chances of HIV and sexually transmitted infections being passed on.All types of contraception (except the diaphragm and cap) are suitable for women with HIV who are not taking treatment. Some methods are less effective if you are taking anti-HIV drugs. Several anti-HIV drugs interfere with the way some ‗hormonal‘ contraceptives work, and the contraceptive may not be as effective as normal. These hormonal contraceptives are less effective if you are taking HIV treatment: The combined pill The progestogen only pill, also known as the mini-pill Patches – a small beige patch applied to the skin and changed once a week Implants – a small flexible rod inserted under the skin on the upper arm, which works for up to three years Vaginal rings – a small flexible ring inserted in the vagina for three weeks of the month. 26 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Emergency contraception Emergency contraception can be used by a woman if she has not used contraception when having sex, or if the contraception she did use failed for some reason, and she does not want to get pregnant. There are two types of emergency contraception: the emergency contraceptive pill and the intrauterine device (IUD). The emergency contraceptive pill (also known as the morningafter pill) is available to buy from chemists without a prescription. It is affordable and some institutions give it out free of charge. You need to take the pill within 72 hours of having sex. The sooner you take it, the more likely it is to work. There is a another type of emergency contraceptive pill that can be taken up to five days after unprotected sex , but you need to get a prescription for this pill from a doctor and be over eighteen. It is important to let the doctor or pharmacist know if you are on HIV treatment, as some anti-HIV drugs interfere with the way the emergency contraceptive pill works, and you will need to take twice the normal dose. The intrauterine device (IUD) is a small, plastic and copper device that can be fitted into your womb by a doctor or nurse within five days of having unprotected sex. You can have this done at a family planning clinic, sexual health clinic or at some General Practitioner surgeries.The IUD stops sperm from reaching an egg and fertilizing it. It is the most effective method of emergency contraception and prevents up to 99% of pregnancies. It is suitable for women with HIV as it does not contain any hormones. You may want to continue to use it as a long-term form of contraception. But remember that this type of contraception does not prevent passing on HIV or other sexually transmitted infections. Preventing mother-to-child transmission Taking anti-HIV drugs can dramatically reduce the risk of transmitting HIV to your baby. Many women with HIV give birth to HIV-negative children, by taking the following precautions: taking anti-HIV drugs during pregnancy making a careful choice between caesarean section and vaginal delivery not breastfeeding Giving the new baby an anti-HIV drug for a few weeks. By doing these things, the chances of having a baby with HIV is very low – under 1%. If you are on HIV treatment and have an undetectable viral load, the chances are lower still: 0.1%. There are two different ways in which anti-HIV drugs act to prevent mother-to-child transmission. First, they reduce the viral load so your baby is exposed to less HIV while in the womb and during birth. The aim of HIV treatment is to get, and keep, your viral load to undetectable levels (if your viral load is below 50, it is usually said to be undetectable). Second, anti-HIV drugs may cross the placenta and enter your baby‘s body, preventing the virus from ever taking hold. Newborn babies are given a short course of anti-HIV drugs after they are born when their mother is known to be HIV-positive. You can reduce the risk of HIV transmission further by having a managed delivery. The doctor will look at your viral load when you are 36 weeks pregnant and discuss options with you. If you have an undetectable viral load, it is usually recommended you have a vaginal delivery. You will need to continue with your HIV treatment during labor. If the viral load is 27 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives visible, but very low, the doctor will look at your particular situation and discuss possible options. But if the viral load is somehow promising, you may have a planned caesarean section. You will be advised to start your baby‘s four weeks of anti-HIV drugs in the first four hours after he or she is born, and will have an HIV test in the first 48 hours. Further tests will be done in the next months to find out his or her HIV status. It is important to remember you should not breastfeed your baby if you have HIV as HIV is present inbreast milk. HIV treatment during pregnancy If you are already taking anti-HIV drugs and you have an undetectable viral load, you will normally continue with your treatment throughout pregnancy. If you are not yet on HIV treatment, but need it for your own health, you will be advised to start as soon as possible, in the same way you would if you were not pregnant. The situation will be a little different if you are not already on treatment and you do not need it for your own health. The doctor will advise when to start taking anti-HIV drugs during the second trimester of the pregnancy (which is between weeks 13 and 28). It is ideal to start treatment by week 24 of your pregnancy. The higher the viral load, the earlier you will be advised to start taking treatment. If your viral load is over 100,000, you may be advised to start treatment before the second trimester starts. You should continue taking the drugs for the rest of the pregnancy. Your healthcare team can help you with ways to make sure you take your drugs properly if you are not used to this.After the baby is born, you can talk to your doctor about whether you need to continue treatment or not. If your health is good, with a high CD4 count and a low HIV viral load, and you are willing to have a caesarean section, you may take one drug only. Most women take a combination of three anti-HIV drugs. You will need to be on combination therapy, and have an undetectable viral load, if you would like to have a vaginal delivery. You will be advised to start taking combination therapy immediately if you are diagnosed late in pregnancy (after week 32). In this case, you may take a combination with a fourth drug. AntiHIV drugs are safe to use in pregnancy. There may be a slightly increased risk of giving birth prematurely or having a low birth-weight baby. Also, some babies do get anemia (a shortage of red blood cells), but this is temporary. Accessing support while pregnant All women have the right to make their own choices about if and when to have children. If you are having a baby, you should expect and receive the same level of support from doctors and healthcare workers as women without HIV. Your healthcare team will play a key role in helping you stay well while you are pregnant, and in preventing your baby being infected with HIV. Developing a good relationship with members of the team is a very important part of getting the best possible care. There are many HIV support agencies which can provide information, advice and assistance to you at any point. Or you could talk to one of the professionals you are currently receiving HIV services from. That might be someone at your clinic - such as a doctor, health adviser or nurse - a social worker, or an advice worker. Talking to other HIV-positive women who have been through the experience can help to make decisions about pregnancy, birth and looking after your baby‘s health. Many women only discover they have HIV soon after they find out they are pregnant. 28 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Knowing you have HIV will allow you to take steps to look after your health and protect your baby, but it can be an overwhelming time. There can be mixed feelings, lots of new information to take on board and pressure to make decisions quickly about taking anti-HIV drugs. It can be helpful to spend time talking things over with a doctor, nurse, midwife or someone from any HIV organization.Hopefully you may also be able to talk to other women who have been or are in a similar situation. Feel free to ask lots of questions (and make sure they get answered). If you are diagnosed with HIV while pregnant then you may need emotional support in coping with your diagnosis and information about transmission and treatments. Antenatal care Good antenatal care is important to anyone expecting a baby. If you have HIV, it is an essential part of reducing the risk of your baby being born with HIV, as well as helping you stay well during your pregnancy and prepare for looking after your baby when he or she is born. You are likely to be looked after by a team of healthcare workers during your pregnancy. You will still get your care at your HIV clinic. But, as well as your HIV doctor and clinic staff, you are likely to see an obstetrician (a doctor who delivers babies), a specialist midwife and a pediatrician.Other people you may see, depending on any advice or help you would like or might need, could include a peer support worker, a community midwife, a counselor, a psychologist, a social worker or a patient advocate. Some of these people can help with any other issues you might have, such as problems with housing, finances or alcohol and recreational drug use. Many women find that peer support is a valuable part of preparing for pregnancy, birth and parenthood. Your health care team can help you adhere to any treatment you need to take and answer questions about your health and that of your baby. You can also talk to them about the best way to feed your baby, and how to explain to people why you are not breastfeeding, if you think that might be a problem. Like all health professionals, the members of your antenatal care team are bound by confidentiality guidelines. They will not disclose your status to anyone without your consent. Women with HIV generally have the same antenatal screening tests as any pregnant women, such as regular ultrasound scans and tests for abnormalities (there is no evidence that rates of abnormalities are higher in babies of women with HIV). You will be tested for sexually transmitted infections as part of your care during pregnancy, as these can increase your HIV viral load and increase the risk of HIV being passed on to your baby. As any pregnant woman would, you are likely to attend antenatal classes to help you prepare for birth and early parenthood. And, like any other pregnant woman, it‘s important to have a balanced diet, and to avoid alcohol, tobacco and recreational drugs. Your healthcare team can help you simplify these things. Effective care after birth Avoid breastfeeding. Because breast milk contains HIV, which means you could pass on HIV if you breastfeed. Always bottle-feed your baby with infant formula milk. Breastfeeding your baby is not good. Because breast milk contains HIV, which means you could pass on HIV if you breastfeed. The clinician will provide advice on feeding your baby safely and comfortably.If you have money worries, help may be available for the cost of formula feed and equipment. Feeding time can still be an occasion for bonding and holding the baby close. You may have mixed feelings about bottle-feeding, especially if most mothers you know do breastfeed. Remember, by 29 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives bottle-feeding you are taking the best care of your baby, and are giving him or her best chance of growing up without HIV. Family and friends may ask why you are not breastfeeding, and dealing with their questions can be difficult. If you do not want to talk about HIV, you could say that you are not producing enough milk, that you have mastitis (inflammation of the breast), or that you have cracked nipples. Your baby will also need to take a special liquid form of anti-HIV drugs for a number of days after birth. This does not mean that the baby has HIV. To check that your baby is not infected, HIV tests will be done just after birth, at six weeks, and at twelve weeks, with a final HIV antibody test at 18 months. If these tests are negative and you have never breastfed, you will know for sure that the baby does not have HIV. You need to avoid breastfeeding, but apart from that, HIV transmission is not an issue in day-to-day life with your baby. You can kiss and cuddle without worry. Most women feel sad or down during their baby‘s first year. The overwhelming life changes brought about by a new baby are always challenging, but they can be particularly complex for women with HIV. Your baby‘s arrival could be accompanied by anxiety about the future, self-doubt and exhaustion. You might have nagging worries that your child has HIV, even when the test results tell you otherwise. Perhaps you can ask friends and family for help with some things, but cannot talk about HIV with them. Your midwife, other clinic staff, support organizations and other HIV-positive mothers will be able to support you through this time. Terminating pregnancy You may find this information useful if you consider having an abortion while pregnant and do not feel like having a child. If you are faced with this situation, a first step could be to talk over your options with someone with experience of these issues. You may have mixed feelings, and not be sure what you want to do. Remember that, although you have HIV, you can still have a healthy, HIV-negative baby. But it is up to you to decide if and when you have a child. You could speak to someone at a contraceptive clinic, a sexual health clinic, your HIV clinic or your GP surgery. Two main techniques are used for abortions done in the first three months of pregnancy: Taking one tablet one day, and different tablets up to two days later. The pregnancy will end after a few hours, and may feel like a heavy period. This is often called ‗medical‘ abortion. The suction method, where a tube is placed through the vagina to the womb and the pregnancy is sucked out, under a local anaesthetic. This is called a ‗surgical‘ abortion. Both techniques are as safe for women with HIV as for other women, and are carried out in the same way. An abortion done during the first three months of pregnancy is more straightforward than one done later on. You will not usually need to stay overnight if you have a surgical abortion. Other, more complex methods are used for later abortions. Abortion is legal in some countries and only allowed in exceptional circumstances. Abortions are usually carried out at a specialist clinic. Your first visit will be an opportunity to ask questions, tell the doctor about any health issues, have tests and examinations, and to decide what you want to do. The service will be free. You can get pregnant again very soon after having an abortion, so it is important to use contraception if you still want to avoid pregnancy. 30 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives 31 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives UNCERTAINITIES SURROUNDING HIV/AIDS Advances in antiretroviral treatment and the lessons learnt from research and experiences around the world means that you can live with HIV and learn how to best maintain your wellbeing. During the early years, living with HIV was more challenging because not much knowledge, expertise and resources were available. AIDS is a progressive disease that generally gets worse or more severe over time. In some people, AIDS gets worse quickly whilst others progress more slowly. Some otherwise a progressive disease such as HIV infection can quite often be halted by treatment.For most people the first time they are told they have a progressive disease is the news of diagnosis. But news, whether good or bad, can also come at other times, whether it is when HIV infection develops into AIDS, when cancer recurs, or the good news when someone is told that their treatment has worked. On hearing they have AIDS many people assume that they are likely to die much sooner than they previously expected. But it is possible that their life is not going to be significantly shortened at all. For example, if a person has been newly diagnosed with cancer a complete cure may be possible, or if a person has been diagnosed with HIV and antiretroviral drugs are available, they may go on to eventually die of old age. Sometimes people will ask a direct question such as: Am I going to die? Or how long have I got? Faced with the possibility of a premature death, they want to know how long the rest of their life is likely to be. But whilst some people may want a prognosis, others may not want such further information at all. No doctor or any other health professional can tell exactly how long the rest of your life is going to be. But you can be given a prognosis, which medically is a forecast of the likely outcome of an illness or disease. However, a prognosis is only based on the average length of time people with a similar condition usually live. Many people can expect and indeed will live for longer than the average, whilst some people will live for a shorter time than the average. Nobody knows when death will strike but you may well die of old age. Many health professionals find it very difficult to answer patients' queries about prognosis, and some will try to evade such questions. But they should be prepared to answer if asked directly as some people do find a prognosis helpful in planning the next part of their life. You might receive the answer: ―You may well die of old age― This means they think you will be cured, or your cancer will be in remission or that with HIV/AIDS that you should be able to lead a good quality of life for many years if you take antiretroviral drugs.If the news is not quite as good, a helpful prognosis is still likely to be given as an approximate number of months or years, rather than anything more specific, for example: ―five years or maybe it could be ten‖, although sometimes a doctor will need to give the reply: “a year, or possibly two.―But a prognosis is only an average and is never going to be exact. You may realize at that moment that life as you knew it would never be the same. There are many different emotions that you may feel. You may feel angry, afraid, sad, worried, scared, lonely, fearful, or even relieved. You may want to scream, shout, or cry. People react in many different ways when they are given bad news, and there is no one right way to react. Over time you will find a way of dealing with it that suits you, but it might be quite different to the way other people cope. When you first get the news, it is like you have been hit in the stomach and you are so full of fear and apprehension and, ‗What do I do? What do I do? What do I do? 32 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Most people will be shocked and upset, and many will be fearful and possibly angry, particularly if the news was unexpected. You need to take whatever time you need to think about what you want and need to do. If you give it a couple of days and let it settle in, then you can begin to absorb the information and deal with it. Hang on during that awful, awful, overwhelmed period. Establishing an HIV/AIDS Doctor Finding the right doctor is one of the most important health care decisions you will make. This person will work closely with you, guiding you through many treatment decisions. Although it's important to seek care as soon as possible, do not rush into making a choice. The relationship with your doctor is an important piece of your health. You are a team: you tell the doctor about how you feel day to day, and the doctor provides information to keep you as healthy as possible. Identifying the best doctor and communicating honestly with that doctor is essential. The HIV/AIDS doctor you choose should be knowledgeable about HIV and have experience treating patients with AIDS (acquired immunodeficiency syndrome). You will also want to find a person with whom you feel at ease and can talk comfortably -- and one who shares your basic philosophy about health care. Do not downplay the importance of this. How you feel about your doctor's personality, approach, and responsiveness may greatly affect your feelings about treatment.You may want to interview several doctors before deciding on one. Consider factors such as these: Do you want a doctor who will allow you to take an active part in decision-making? Or do you prefer a more traditional doctor-patient relationship, where the doctor takes the lead? Do you want a doctor who is aggressive about treatment -- encouraging you to try new drugs or participate in research trials? Are you interested in trying complementary care, such as homeopathy or vitamin therapies? If so, will the doctor support this approach? Being honest and talking to your doctor is very important. Doctors can seem intimidating, but do not assume that they know each and everything. They need complete information from you for your own benefit. Spell out things that might affect your health, including stressors, lifestyle challenges, alcohol and drug use. Always demand for typed information in order to avoid wrong medication especially if on referral, do not rely on the doctors own handwriting because it might be misinterpreted by another doctor. Ideally, you can openly talk to the doctor about your questions and concerns. When it comes to HIV treatment, you are the one who has to take it, not your doctor. Making sure you have all the answers you want before you start a safe and inspiring place to go for answers once you have started is vital. While ART is the best bet for improving your health overall, there are things you can do to improve your health if you feel you are not ready yet. If you are not happy with your doctor, you can improve or strengthen confidence and communication? Try to be open and do what you can do and leave what you cannot. If you get your health personnel at a drop in clinic, it can be tough to have a consistent relationship with one doctor. Some clinics do make appointments, so try to see the same doctor each time. 33 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Contemplating about your own death There may come a time when it is very clear that your illness is probably going to cause a premature death. This may happen because you are told this by a doctor, but it may also be a more gradual realization that this is likely to happen. It is very difficult for most people to talk about death and dying. ―The days go by; we talk about anything and everything. Everything that is except the things that we should talk about: what is going to happen at the end? What do you want for your funeral?‖ But if you can talk it can be a help, not only in respect of talking about the emotions, the grief and the sadness, and maybe even the fear, but also talking about practical matters.There is a fear of death; mine and yours. Experience teaches us that few people can bear to discuss death, your possible death and mine. The fear is so great even for discussion. .. We seem able to talk about sex more nowadays, money, religion, politics, and all the old taboos. But death still scares us witless. You might have come a long way thinking about death. You know that you do not want to be put on a ventilator or resuscitated if you become seriously ill. You know where you would like the funeral service to be held, and you would like flowers and everyone to dress up, wear bright colors and would like lots of people to stand up and say nice things about you. ―In some cases it is possible to prepare a ―living will‖ which describes when life-saving treatment should and should not be given. Also a ―durable power of attorney‖ may allow you to name a person who will be able to make decisions about your treatment when you are not able to decide for yourself. Not everyone wants to talk in advance about the arrangements they would like for their funeral, and indeed how it is to be paid for, although there is more discussion about this in some families, than many people might think. But make sure that you have made a will, and put important papers where they can be found. In this increasingly electronic age in which many people live, it can also be helpful to make sure that you are not the only person knowing the password to online files. It is also important to make arrangements for the care of children or other dependent relatives. The other parent will often be the choice for the care of children, but this may not always be possible or appropriate. Consider who you think would be able to offer love, warmth, stability, patience, continuing contact with friends and relatives, and seek the agreement of your chosen guardian. It can also be helpful to write down your wishes in a will. For the children it can be helpful to make a ―memory box‖, containing books, letters, photos and other mementoes. But making a memory box for children, and doing other practical things, is not a reason for not talking to them, whatever the disease, the circumstances, or the children‘s age. And if you do not talk to them they may find out the information some other way. When a person is likely to live for only a few more weeks or months, it is often referred to as the period when someone is terminally ill. Terminal care‖or―ends of life care are expressions sometimes used to refer to the care that a person needs at this period. It is best to ask your family doctor or whoever is responsible for your medical care, what local services are available. Do not presume they will tell you if you do not ask. The period when someone is terminally ill is a particularly fearful time for everyone involved. Sometimes this fear may result in the person being moved to a hospital or hospice, or they may be moved because they have a reversible problem such as an infection, for which hospital treatment is desirable and should be provided, or it there may be no other way that sufficient nursing and social care can be provided. 34 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives It is vitally important that the person, if at all possible, is fully involved in any discussion about a move, particularly if they had earlier been against it. If the person appears to agree to a move, it is crucial that it is what they really want and not something that they are agreeing to for some other reason (perhaps because they do not want to upset their relatives for example).Once a person is in hospital it can be difficult to arrange for them to be discharged, as health workers can be nervous about whether the person will have sufficient care. It may be necessary to express your wishes quite clearly.There can be considerable pressure on the relatives and difficulties for them as well. As you become sicker you may move in with relatives, in order for your family to provide more help. Although such moments can be extremely helpful for both the person and their family, the effect on everyone needs to be considered before such a commitment is made. But sometimes if there is insufficient help from other people, relationships can be stretched to breaking point, and beyond. It is crucial for everyone that providers are offered and indeed accept extra help before they start to feel this way. Sometimes providers are encouraged to continue without extra help because ―it is not going to be long now‖, but it is never possible to be sure how long it is actually going to be. There can be particular benefits to the last few days being at home, and some of these benefits can also arise if the person is in a hospice. Once you are free of the hospital, the tension and pressure begins to fall away, and the last days are suddenly free of fear. Time is incredibly valuable. All the crushing worries, torments and pain of the preceding months simply float away. They no longer touch you. Your daily routine relaxes. When dying you may not want the dressing on your thin body changed? It does not matter anymore. Instead, you may have lots of time to exchange memories, to be closed together, undisturbed by the noise and inevitable hectic environment of a hospital death.It is impossible to be certain how long you are going to live, because even with a progressive illness, death can be unexpected and sudden if the illness causes a major failure in some part of the body. This is why it is so important to plan ahead, and say those things which need to be said whilst you have the chance, because you never know which conversation might turn out to be the last. More often though with a progressive disease, death will be a gradual and slower process, and there will often be signs that it will probably not be too long before death will occur. These signs do of course vary greatly, not only from illness to illness but from person to person, but may well include the person becoming gradually but noticeably weaker and perhaps less interested in things which are happening around them. You may also become quite sleepy during the day, and possibly a little confused about what day or time it is.When dying you may often be fearful and lonely. Most of us fear the unknown, and no one else can tell what it will be like. As a relative or provider you may also be fearful, fearful for the grief that you know is coming, and fearful of the actual moment of death and the period leading up to it. You might have never been present when someone is dying. There is no “right” answer about what you should do or say, and there is not always a need to talk. Many people are particularly afraid of the physical aspects of death. Much can be done by a doctor or nurse to ensure that neither the person dying nor other people present are unduly distressed by any additional physical symptoms. If such symptoms are likely to occur they can usually be controlled with medication. If a person is in hospital, and even more so if no relatives 35 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives or friends are present, a doctor can provide very important help at this time, as this patient explained a few moments before she died.― Though I am sick, I am more worried for the other patient with a severe cough. He is likely to die this night.‖ Within a few moments, this patient passed away and the one she tried to predict survived for more than two years. Coping with death From a sadness which is with us frequently to a sadness that is always part of us but no longer gets in our way, we can begin to be happy and move on in our lives. But in due course the grief finds a place, and you find support, and continue with your activities and lives. If you are fortunate and you live much longer than expected, then it won‘t matter if the practical things have been done. But if you do die without doing them it can cause unnecessarily difficulties and indeed suffering for those left behind.As a relative or friend, this is what you can say about the demise of your loved one. ―You took a long breath and stopped, after a minute you took another long, long breath, like a sigh. So peaceful, no pain, no loss of dignity. We had promised you that. You equally trusted us all and we did not let you down. You took two further breaths with everyone there and then your body was at peace. How peaceful and beautiful death can be when it is a gentle release from a progressive disease? Then death has been accepted, as you had accepted it, without fear.‖ We shall meet in eternity. 36 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives MANAGINGHIV/AIDS DIAGNOSIS Getting an HIV diagnosis can feel like the worst news in the world. It is common to feel anger, fear, confusion, shock, grief, depression, or other painful emotions. Even after you have known for some time and think you are coming to terms with the news, it may suddenly hit you all over again. The first step in getting through this difficult period is to understand that these feelings are normal responses to your diagnosis. Ignoring them will not make them go away. Allow yourself to feel what is inside you. It is ideal to cry if you feel like it. Anger, fear, and sadness are emotions that most people with serious illnesses experience. You are facing the possibility of getting sick or dying. You may be scared that you will not see the children in your life grow up. Or maybe you are afraid that you will not achieve your life goals. In the beginning, it may seem that testing positive is a death sentence, but this is not true. There is life after a positive test. In fact, many people living with HIV (HIV positive) lead full and healthy lives. You may also feel that you are now damaged in some way and that no one will want to love you because you are HIV positive. Or you may blame yourself for getting HIV and ask yourself, "How could I have let this happen to me?" Try not to be too hard on yourself. Guilt and shame can be destructive. Forgive yourself if you need to. If possible, try to have some compassion for yourself. You have just gotten bad news and must face changes and challenges ahead. Remember that you are still the same person you always were, as capable of giving and receiving love as ever. Being diagnosed with HIV may present many challenges. Building a support network can help you learn to cope. Take your time and do not feel that you have to tell everyone right away. It is important not to let fear of being judged cause self-isolation and not talk to anyone. If it is hard to tell family and friends at first, you may want to turn to HIV organizations. Many newly-diagnosed people want to speak with others in the same situation. This can decrease isolation and help overcome stigma. There are many AIDS service organizations (ASOs) that offer support and information to HIV positive people. ASOs are great places to find helpful, non-judgmental people to talk with, and many offer support groups. Joining a support group and talking about your feelings in a safe space may reduce fears and concerns. Finding networks or others who are in similar situations might also help you not feel so alone. As upsetting as testing positive can be, you are better off knowing. Once you know you are HIV positive, you can take charge of your health and have the best chance to slow or prevent disease progression. Getting informed about HIV and its treatment will help you make the best of your situation. An important factor in getting good care and treatment is to find the right health care provider. 37 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Look for a health care provider who specializes in treating HIV. Even though there is no cure for HIV disease, there are many treatments that help keep HIV under control. You will need to get information and work with your health care provider to decide what treatments are best for you. There are many good places to get information including ASOs, hotlines, and websites. But be careful about the information you are getting. Check it out with your health care provider or other reliable sources to make sure it is accurate. Remember, there are no "miracle" cures. If it sounds too good to be true, it probably is not true. Learning that you are HIV positive may make you feel you have lost control over your life. Try not to let this rush you into making decisions when you are still coming to terms with your diagnosis. You are in charge of your own life. You can decide which treatments and when to use them. Take time and learn about your options. Unless you are very ill and need to make treatment decisions quickly, you have time to think things through. Aging with HIV: Get prepared Your body wears out as you get older. As you get older, your skin wrinkles because it becomes thinner and less elastic. It gets drier too as it makes less oil and sweat. Your bones become more visible as you store less fat beneath your skin. Inside the body your bones and muscle become weaker. Your memory gets worse, and your immune system cannot fight AIDS as easily. Never limit yourself!! Dream big!! Believe in yourself! No matter what cards you are dealing with, make the best out of any situation. LOVE BIG!! LIVE INTENSELY!! Accept the struggle and overcome it with dignity and without the need of being bitter or selling yourself or your soul. Nothing lasts forever so embrace everything and everyone. Everyone ... good or bad is a teacher. Evolve spiritually and do not only focus on having material things. No one has a perfect life or is immune of problems!! The difference is the attitude that we have with negative situations and seeing the glass full and not half empty. You have a wide breadth of talents and always put them into practice. So far, you have known very little and the rest is unknown. Remember, life is a path full of roses filled with thorns. Being diagnosed with HIV is life changing. Once you are positive, it will never become unknown again. Learn to see yourself as a person living with HIV, not a victim. You can do this by getting informed, taking charge of your health care, and learning how to manage HIV. There are many resources for help on this new path. You may find that some of the priorities in your life now change. This can be a good thing. Facing a serious illness can prompt people to make their lives better. Many positive people make favorable changes such as breaking bad habits like drinking too much or smoking. 38 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives As serious as the diagnosis is, there is good reason to have hope that your life will be full and healthy. Do not give up on yourself or your dreams.There are many things you can do for yourself to stay healthy. Make sure you have a health care provider who knows how to treat HIV. Begin treatment promptly once your doctor tells you to and keep your appointments effectively. Follow your doctor's instructions. If your doctor prescribes medicine for you, take the medicine just the way he or she tells you to because taking only some of your medicine gives HIV infection more chance to fight back. If you get sick from your medicine, call your doctor for advice; do not make changes to your medicine on your own or because of advice from friends.Get immunizations (shots) to prevent infections such as pneumonia and flu. Your doctor will tell you when to get these shots. Practice safe sex to reduce your risk of getting a sexually transmitted disease (STD) or another strain of HIV. If you smoke or use drugs not prescribed by your doctor, quit. Eat healthy foods. This will help keep you strong, keep your energy and weight up, and help your body protect itself. Exercise regularly and have enough time to sleep and rest. Take time to relax. Many people find that meditation or prayer, along with exercise and rest; help them cope with the stress of having HIV or AIDS. There are also many things you can do to protect your health when you prepare food or eat, when you travel, and when you are around pets and other animals. Paying your first visit to a doctor Waiting in your doctor‘s office can make you feel nervous, impatient, or even scared. You might worry about what is wrong with you. You might feel annoyed because you are not getting other things done. Then when you see your doctor or nurse, the visit seems to be so short. You might have only a few minutes to explain your symptoms and concerns. Later that day, you might remember something you forgot to ask. You wonder if your question and its answer matter. Knowing how to talk to your doctor, nurse, or other members of your health care team will help you get the information you need. During your first appointment, the doctor will ask questions, examine you, take a blood sample, and do some other tests. Your doctor also may do a skin test for tuberculosis and give you some immunizations (shots). Tell your doctor about any health problems you are having so that you can get treatment. You also should ask your doctor any questions you have about HIV or AIDS such as; what to do if the medicine makes you sick where to get help for quitting smoking or using drugs how to create a healthier diet And how to minimize the chances of spreading HIV to your partners etc. Your blood sample is used for many tests, including the CD4 cell count and viral load. Your CD4 cell count tells how many CD4 cells you have in your blood. If you are getting treatment, your CD4 cell count indicates how well it is working. If your CD4 cell count rises, your body is better able to fight infection and vice versa. Viral load testing measures the amount of HIV in your blood. Your viral load helps predict what will happen next with your HIV infection especially if you do not get treatment. Keep your follow-up appointments with your doctor. At these appointments you and your doctor will talk about your test results, and he or she may prescribe medicine for you. Antiretroviral medicines. Because HIV is a certain type of virus called a retrovirus, the drugs used to treat it are called antiretroviral medicines. These powerful medicines 39 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives control the virus and slow progression of HIV infection, but they do not cure it. You need to take these medicines exactly as your doctor prescribes. HAART. This treatment for HIV is a combination of three or more medicines. This regimen of medicines is called Highly Active Antiretroviral Therapy (HAART). How many pills you will need to take and how often you will take depend on which medicines your doctor chooses for you? Remember, each HAART regimen is tailored for each individual patient. There is no one best regimen. HAART may cause some side effects. You and your doctor should discuss potential side effects so that you will know if they occur. If you experience any side effects, even those that may seem minor, you should talk about them with your doctor. Other medicines. Your doctor may also prescribe other medicines for you, depending on your CD4 cell count. Always discuss any side effect with your doctor. Never change the way you are taking any of the medicines without first talking with your doctor. If you do not take your medicines the right way, they may not be as effective as expected. Treating other infections. If your HIV infection gets worse and your CD4 cell count falls to worrying levels, you are more likely to get other infections. Your doctor may prescribe medicines to prevent particular infections, such as PCP. The most important thing you can do after learning that you have HIV is by working closely with your doctor. Because HIV and HIV-related illnesses vary from person to person, your doctor will design a medical care plan specifically meant for you. To help the doctor make the best choices for you, you must tell the doctor about any side effects or symptoms you have. Other diseases you may get. Because HIV damages the immune system, you may have a higher chance of getting certain diseases, called opportunistic infections. They are so named because an HIV-infected person‘s weakened immune system gives these diseases the opportunity to develop. Fortunately, people with HIV who take HAART can go a long time before their immune system is damaged enough to allow an opportunistic infection to occur. That is why it is so important to get tested and start treatment early. You may be infected and do not know that you have HIV until AIDS or when an opportunistic infection surfaces. Certain symptoms can occur with opportunistic infections Breathing problems Mouth problems, such as thrush (white spots), sores, change in taste, dryness, trouble swallowing, or loose teeth Fever for more than two days Weight loss Change in vision or floaters (moving lines or spots in your vision) Diarrhoea Skin rashes or itching Tell your doctor right away if you have any of these problems. Your doctor can treat most of your HIV-related problems, but sometimes you may need to go to a specialist. Visit a dentist at least twice a year, more often if you have mouth problems. One of the most important relationships for a person living with HIV is the one you have with your doctor. (This might also be a nurse practitioner, or physician assistant, or other person on your health care team.) This relationship can have a big impact on your well-being and how well 40 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives you will do with your treatment. The doctor can work with you to create the best treatment plan for you. He or she can give support and help you face challenges. Your regular doctor or trained HIV counselor can help you find a specialist with experience treating HIV and AIDS. A doctor who specializes in HIV/AIDS can provide comfort during this time. He or she may also give you referrals to programs offering social support, housing, case management, and other services. The specialist may have a team at the clinic that can help you with some of these issues. When choosing an HIV doctor, you should feel comfortable with her and have faith in her abilities. If you are pregnant or planning to become pregnant, this is especially important. Even though you will find a doctor to help you with your HIV, over time you will still need to see a doctor for other health issues. If you do use multiple doctors, they must work as a team and communicate with each other. Some questions you may want to ask a doctor who specializes in HIV include: Are you an HIV specialist? Ideally if you are infected with HIV, you need to be treated by HIV specialists. Have you treated many people with HIV? It is important to find a doctor who has experience with the unique issues people with HIV and AIDS face. What do you think about me participating in treatment decisions? Try to find a doctor who wants you to participate in treatment decisions, such as when to start medications and the use of complementary and alternative therapies. What other services and providers does your clinic have? Try to find a clinic or office that has many kinds of health care workers. Whether all your doctors are in one place or not, your HIV doctor should serve as a link to other people on your HIV care team. Other important members of the care team may include: 1. Nurses and nurse practitioners 2. Physician assistants 3. Pharmacists 4. Dentists 5. Social workers 6. Psychologists 7. Dietitians 8. Case managers Building a good care team is just one step in improving your health with HIV/AIDS. Being a proactive patient is vital. Always give your doctor as much information as you can. Be honest about whether you are taking your medications on time. Tell your doctor about your side effects. Be honest about sex and whether you are using protection. Come prepared to each doctor appointment. Protecting other people from infection Things you SHOULD do Abstain from sex. The surest way to avoid transmission of STDs, including a different strain of HIV, is to not have sexual intercourse. Use condoms correctly and consistently. Correct and consistent use of the male latex condom can reduce the risk for STD transmission. However, no protective method is 100% effective. Condom use cannot guarantee absolute protection against any STD. If you are allergic to latex, 41 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives you can use polyurethane condoms. Condoms lubricated with spermicides are no more effective than other lubricated condoms in protecting against the transmission of HIV and other STDs. If you use condoms incorrectly, they can slip off or break, which reduces their protective effects. Inconsistent use, such as not using condoms with every act of intercourse, can lead to STD transmission because transmission can occur with just one act of intercourse. Use protection during oral sex. A condom or dental dam (a square piece of latex used by dentists) can be used. Do not reuse these items. Regular health monitoring To make sure that you receive the most appropriate treatment and care, it is very important to visit a clinician for regular check-ups. During your regular check-ups at a clinic, there are a number of ways your doctor can check for your health. The most common are: It is important to be honest with your doctor about how you are feeling, any problems or concerns you have, or any symptoms and side-effects you are experiencing. The doctor will ask questions, such as whether you are having any problems taking any anti-HIV drugs you are on or how they make you feel. But it‘s ideal to come prepared with anything you have noticed, or are worried or curious about. If you mention any symptoms, part of your check-up will involve looking at your body and examining any unusual signs or symptoms. Your doctor, or another member of the healthcare team, will also regularly check your weight and blood pressure. Samples of blood will be taken and these will be examined in a laboratory. These tests are used to assess how HIV is affecting you and how well any treatment is working, and to check your general health. Often your doctor will order several different blood tests. It may look like you are having a lot of blood taken, but only about a teaspoon of blood is taken in each test tube. Occasionally, you may have other types of tests as well. If you have some specific symptoms, then you may need to have tests such as X-rays, scans or ultrasounds that allow your doctor to see inside your body. For some investigations, it may be necessary to remove a small sample of body tissue for examination in a laboratory. This is called a biopsy and it‘s normal to have this done using a local anaesthetic. Your clinician will closely monitor all aspects of your health that are related to HIV. However, it is also important to register with a doctor (family doctor), who will be able to look after your general health needs that are not related to HIV. For example, Doctors are well-placed to help with other long-term conditions such as hay fever, asthma and high blood pressure, mental health problems and conditions related to getting older. Your doctor may prescribe medication to deal with these conditions; it‘s important to discuss the possibility of interactions between these and any HIV treatment or other medication you are on. You may have your cardiovascular risk checked at your doctor surgery, your annual cervical screening done there, or get any vaccinations you need, including the annual flu vaccination recommended for people with HIV. Living a healthy lifestyle is an important way of staying well with HIV. Your doctor can help with crucial things such as eating well and losing weight, doing exercise, and stopping smoking and cutting down on alcohol and drug use. Community pharmacies can also offer advice on healthy living, losing weight and how to stop smoking. Telling your doctor that you are HIV positive will help them have a full picture of your health to ensure you get the best possible care. For example, they will be able to take HIV into account in assessing any symptoms you have. And, if you are taking anti-HIV drugs, your doctor will consider potential interactions with any other medications you need. 42 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives 43 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives HIV TREATMENT Treatment with anti-HIV drugs is sometimes called combination therapy, because people usually take three different drugs at the same time. It is also known as antiretroviral therapy, or highly active antiretroviral therapy - HAART for short. HIV treatment does not cure HIV. But it stops the virus reproducing in your body. It can reduce levels of the virus in the blood to such low levels that it is not able to cause damage to your immune system. Once you start HIV treatment, you are likely to be taking it for the rest of your life. The essence of HIV treatment is an undetectable viral load. This means that the level of HIV in your blood is so low; it cannot be detected by the tests used to measure viral load. But it does not mean there is no HIV at all. The risk of a person living with HIV, who is taking effective antiretroviral therapy (ART), passing HIV on to sexual partners through vaginal intercourse is extremely low, provided the following conditions are fulfilled: There are no other sexually transmitted infections in either partner The person who is HIV positive has a low viral Viral load testing should be undertaken regularly (three to four monthly). From a heterosexual perspective, successful ART use can provide similar levels of protection in relation to other sexual practices, including unprotected anal intercourse between men or between men and women. However, it is expert opinion that a similarly extremely low risk of transmission can also be anticipated for these practices, provided the same conditions stated above are met. Before you make any decision about not using condoms, get advice from your HIV doctor or nurse practitioner. Not on treatment Not everybody with HIV needs to take HIV treatment straight away. It is different for different people, but it usually takes several years after infection before it is required. If you are not on effective HIV treatment, HIV can attack and weaken your immune system (the body‘s natural defense against infections). When HIV has done a lot of damage to the immune system, you are likely to become vulnerable to infections that you would normally be able to fight off. HIV also causes inflammation in various parts of the body. This can increase the risk of a number of illnesses. These include cardiovascular disease (for example, heart attack and stroke), kidney or liver problems and some cancers. The damage that HIV causes happens slowly, often over a number of years. It is often the case that a person feels well during this time but even if you‘re in good health, HIV is likely to be causing damage to your immune system and, possibly, other parts of your body. Even if you do not need to start treatment, it is very important that you have regular check-ups at a specialist clinic. This could be once every three to six months, depending on the status of infection. Checkups provide an opportunity for HIV doctors and other healthcare professionals to monitor the effect of HIV on your body. This will involve a number of blood tests. Two of the most important are a CD4 cell count and viral load test. Looking at the results of these and other tests will help you and your doctor makes a decision about starting HIV treatment. One situation where you will need to start treatment, even if you don‘t yet need it for your own health, is if you become pregnant. With good medical care, it is possible for women with HIV to give birth to healthy, uninfected children. HIV treatment can be used so you can have a safe pregnancy and birth. 44 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Thinking about treatment Your physical health is an important factor, but the 'right' time to start HIV treatment also depends on your feelings – it is your own decision. Some people find starting HIV treatment a difficult commitment to make. Starting treatment can often mean that you have to think through how you will manage the aspects of your day-to-day life. Before starting treatment, you should give yourself enough time to talk through all your options. As well as talking to your doctor, you could speak to other people with HIV (perhaps at a support group) and advisors at local HIV organizations. If there‘s a friend or family member who is supportive, they may also help to make your mind up. The advantages of starting early treatment of HIV: You may have less illness, if HIV has been making you ill. The treatment will stop HIV reproducing. Your immune system will be strengthened. You will become less infectious. This could be particularly important to you if your partner is HIV negative. The disadvantages of starting HIV treatment: You may get side-effects from the drugs you are on. You will have to take your drugs every day at the right time. There is the risk of developing drug resistance. Unless you are already ill, it‘s best to only start combination therapy when you feel you are ready for it. You need to be sure that you will be able to take it exactly as prescribed. Here are some questions to ask yourself about fitting HIV treatment into your life: Do I know enough about HIV treatment, how it will affect me and what benefits it can have for my health? Starting treatment will involve making changes to my life and routine. Can I concentrate on that at the moment? The first few weeks on a treatment are often the most difficult. Can I make my health a priority and give myself extra time to adjust? For example, could I take time off work? Have I found it difficult to take medicines in the past? If I had problems, what were the reasons for this? How can I avoid these problems in the future? If I have problems remembering to take my drugs on time, who could I talk to for support? Could I ask somebody to remind me - a friend or a housemate? Are there people who I wouldn‘t want to see me taking my drugs – people at work, people I live with, friends or family? What about people I might meet in the future - like a new partner? How will I deal with them knowing I‘m taking anti-HIV drugs? Will this put pressure on me to tell them I‘m HIV positive? Starting treatment There are several factors you should consider when you are thinking about starting HIV treatment, including how you feel about starting and taking treatment. The results of the regular 45 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives blood tests you have as part of your HIV care can help you and your doctor decide whether you should start treatment. But there will be other factors to take into account. It is unlikely that you will have to make a quick decision - you will probably have an opportunity to consider the pros and cons over a period of time. If your CD4 cell count is already very low or you are ill with an infection, you may need to make a decision more quickly. Taking HIV treatment reduces the amount of virus in your blood and other body fluids, including semen and vaginal fluids. This reduces the risk of HIV being passed on to others. You may want to consider starting treatment earlier if you have an HIV-negative partner, for example. Your doctor may talk to you about this, or you could raise it with them. If your doctor recommends that you start treatment but you decide that you would rather not start yet, it is very important that you stay in touch with your clinic and have your health monitored regularly. There are some tips you can use to help in taking your treatment: To get into the routine of pill-taking, you could practice for a few weeks before starting. Try having mints or vitamin tablets at the times you‘ll be taking your treatments. Learn from this and work with your healthcare team to come up with a schedule that is right for you. Keep your medication in a place where you will remember to take it and try to link your pill-taking times with other daily routines – getting up, meal times, taking the children to school, a particular radio or TV program, or tea breaks at work. Ensure you collect your new prescription in plenty of time to ensure you have a good supply of drugs and make sure you keep your drugs in a safe, dry, cool place, away from children. Bathrooms are not ideal because of the humidity. You can probably get pill containers or dosette boxes from your clinic. They have compartments where you can divide up your tablets according to when they need to be taken. They can help if you forget which pills to take, or if you‘re not sure whether you‘ve already taken your pills. Keep a note, a picture or some other reminder on the back of your front door to remind you to take medication with you before leaving home. You can also set an alarm on your mobile phone or watch to ring when your doses are due, although this can draw the attention of other people. If you keep a diary or pill planner you can tick off the dose once you‘ve taken it, and if you use a computer at work, you can use the calendar or task program to automatically send you reminders. You could use a code word to mean anti-HIV drugs. Plan for weekends, holidays or other times when you don‘t have your usual routine. Make extra efforts to remind yourself and, if appropriate, ask the people you‘re with to remind you. Take extra medication in case your scheduled return is delayed. Keep a bottle of water in your bag, so you can take your treatment wherever you are. If you don‘t want people to see you taking your treatment, excuse yourself to go to the toilet or to make a phone call. Avoid running out of your medication by renewing your prescriptions in advance. Ask a partner, trusted family member or friend to remind you to take your doses. Keep an emergency dose close at hand – for example, in your bag, glove compartment of a car or at a partner‘s or friend‘s home. If you have to go to an Accident and Emergency department at a hospital, take sufficient HIV medication with you in case you are admitted. If you are having problems taking 46 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives your treatment, talk to a member of your HIV healthcare team – help and solutions will be provided. ANTIRETROVIRAL DRUGADHERENCE In order for HIV drugs to do their job properly, you need to do yours! Your job is to take drugs exactly as they are prescribed. That means taking the correct amount (dose) at the right time, and as directed (e.g., with any food or medication restrictions). Adherence means taking your medications correctly. If you do not, HIV might multiply out of control. However, the fewer doses you miss, the better the chances of keeping HIV under control and the lower the risk of developing viral resistance. The HIV virus can make millions of copies of itself every day. Antiretroviral drugs (ARVs) cannot kill the virus, but they can almost stop it from multiplying. Despite the improvements in HIV drug treatment (such as reduced side effects, fewer restrictions, and easier dosing); taking HIV drugs is a daily, lifelong commitment. While this can make adherence challenging for many people living with HIV, the benefits are well worth the effort. Staying on top of your treatment every day is not an easy task. Annoying side effects, being disorganized and the hustle and bustle of life can stand in your way. The essence is to find out what works for you and stick to it. Have a friend or family member to remind you to take your meds. Remembering to take your meds is one of the hardest things to do, especially when you are not used to taking medication. The best tool to support adherence is extra encouragement and support, in particular from friends, partners and families. Lifelong adherence to HIV meds is tough but with trusted support in your life taking HIV meds can become more manageable. Ask friends, partners, or family members to give you a call and remind when to take your medications, help you how to fill your pill box, or cheer you on when you are having a bad day and just don't feel like taking your meds.As we know, better adherence leads to less inflammation in the body and this, in turn, will not only prevent HIV from wearing down on the immune system but also protect the heart, brain and kidney from the damaging effects of HIV. And when you decrease inflammation, you greatly slow down the aging process -- looking younger and healthier! You may have your own little routine. You may take meds when you eat dinner. And that is what you might do every single day. So, it is fine to take your medication when you're less stressed, like when you're at home. If you are working, there is so much going on in the office that it may not be a good time. Breakfast might not be a good time, because you might have to deal with side effects that will impact you throughout the entire day. Just adhere to your medications. 47 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives A pillbox is critical. Many people think pillboxes are only for people who take a lot of medications, but even if you're just taking one pill a day, you should use a pillbox that separates your pills by the day of the week. With a pillbox, you never have to wonder whether you took your meds or not. Link medication doses with daily activities. If you take your meds with food, choose the meal you eat every day, preferably at home, and store your pills in the kitchen. If you take your meds in the morning or at bedtime, put your pills next to the toothpaste and take them when you brush your teeth. In most cases, it's better to take your medications late than to skip them completely. That may mean taking a dose at breakfast if you forget the dose you usually take at dinner. Finally, do not panic if you accidentally miss a dose once in a while. Most of the drugs we use last longer (time) in the blood, so the occasional missed dose won't cause you to fail therapy or develop resistance. That's especially true once your viral load becomes undetectable; skipping doses is riskier during the first few months of therapy. Missing multiple consecutive doses is worse than missing a single dose, so don't go away on vacation without bringing enough pills, and don't wait until Saturday night to find out that you need a refill on Sunday. One of the difficulties to adhering is admitting that, for the rest of my life, I am going to have to take meds. People sometimes worry about hitting the bull's-eye every time, every dose. It's not necessary with today's medications. What is essential is to find the easiest, or most reliable, part of the day (or night) and stick with it (give or take a few hours). Try a pillbox, or clock reminder. Some folks use their email or text messages to help. Link taking your medication to a routine, daily activity: brushing teeth, checking email, going to the bathroom, eating, etc. The rationale for Adherence When you take a drug, it gets processed by your body and enters your blood stream. The HIV drugs need to stay in your blood at certain levels to fight HIV. If the level falls too low, the drugs do not work well. When you take your pills on schedule, you keep the right level of the drug in your body. If you do not take your HIV drugs on schedule, drug levels in your blood will drop and HIV will be able to make copies of itself (multiply). When HIV multiplies, your viral load increases and your CD4 cell count goes down. When HIV makes copies of itself, it sometimes makes changes, called mutations. These mutations can help the virus survive, even when you are taking your HIV medication. This is called resistance. When HIV becomes resistant to a drug you are taking, that drug will stop working. At that point, you will probably have to switch HIV drugs. Resistance to one drug can sometimes cause resistance to other drugs you have not taken. This is called cross-resistance. Resistance can affect your treatment choices in the future because fewer drugs will work well against your virus. The best way to prevent resistance is to stick closely to your medication schedule. Taking your HIV drugs exactly as prescribed about 95 percent of the time is needed to get the most benefit from HIV treatment. That means missing very few doses. Starting and Choosing HIV Drugs There are a number of things to think about when deciding whether to start HIV drug treatment. Two of those things are your CD4 count and viral load. It is also important to think about whether you feel able to commit to taking your drugs correctly. If you do not feel ready, discuss it over with someone who knows about HIV. Your health care provider or the staff at the AIDS service organization (ASO) can give accurate information to answer your questions and address your concerns. 48 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Barriers to Adherence Many people find it difficult to be adherent to their HIV medication for the following reasons: A busy lifestyle Not having disclosed your HIV status to work colleagues, friends, lovers, or family Depression, a leading cause of non-adherence, is more common in HIV+ women than HIV+ men Other life stressors, such as childcare or parenting issues Current or past problems with side effects Active substance use or problems with alcohol Overcoming Barriers Even though it may be embarrassing, it is important to tell your health care provider about the number of times you have missed doses or did not take your HIV drugs correctly. He or she may suggest a change in your dosing schedule or drug regimen that makes it easier. Newer HIV drugs require fewer pills per day and have fewer food restrictions. There are also new ways to combine older drugs that make them easier to take. Key issues to consider in adherence Understand that the medications will help you fight the virus and stay well. If you do not think they will, you will not bother taking your pills correctly. If you have any doubts, speak to your health care provider or staff from any AIDS service organization (ASO). Use a daily activity, one that you do every day without fail (like waking up in the morning, walking your dog, or going to bed at night), to remind you to take your pills. When it‘s time to do that activity, you will know that it is also time to take your pills. If you do not want others to see you taking your pills, quietly slip away to a private area or the bathroom. If that will not work, say the medications are for another health problem or that they are vitamins. If you think substance use or mental health issues are preventing from taking your medications correctly, talk to your health care provider or case manager so they can get you help. There are good treatments available. Take advantage of tools available from your clinic or pharmacy such as pillboxes, calendars, diaries, and beepers to help you remember to take your medications on time. Plan ahead for refills or trips so you do not run out of any medications. Adherence means taking your pills in the prescribed doses at the right time, in the right amount and in the right way. Missing doses or not taking doses correctly can lead to your HIV becoming drug resistant. This will cause your treatment to fail and limit the drugs you can take in the future. A high level of adherence is needed for your HIV treatment to work effectively and you should aim to take every dose. Everyone taking HIV treatment should be offered support and advice with adherence. You might find adherence easier to manage if you feel ready to start treatment, and if your treatment fits in with your lifestyle. Keeping a diary, using a pill box, or using an alarm might help you to adhere. Resistance is an important reason why HIV treatment stops working. 49 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Developing resistance is less likely if your viral load is undetectable and you take your HIV treatment correctly. The more you miss doses, the more likely it will be that your drug combination will fail. Some people contract a strain of HIV which is already drug resistant. Resistance tests will be used to help choose the best drug combination for you. Taking your HIV treatment properly is often called ‗adherence‘. You will get the most benefit from your HIV treatment if you take it exactly as it is prescribed. This means: Taking the correct dose. Taking your pills at the right time. Following any advice about food and drink. Checking for any interactions with other prescribed drugs, over-the-counter medicines, herbal or alternative treatments and recreational drugs. Ideally, the aim should be to take all your doses in the right way. Taking less than 95 per cent of doses properly has been linked to increases in viral load and the development of resistance. What does 95 per cent adherence mean? If you are taking your HIV treatment once a day, then 95 per cent adherence means missing no more than one dose per month. If you are taking your HIV treatment twice a day, then 95 per cent adherence means missing no more than three doses per month. If you do forget a dose of your combination therapy, try not to panic or feel guilty – we are all human! As a very general rule, if you realize you have missed a dose, take it as soon as you remember. But if you only realize when you are going to take your next dose, do not take a double dose. You are likely to find treatment easier to take if it fits in with your daily routine and the way you live your life. So it makes good sense to talk about this with your HIV doctor or another member of your healthcare team when you are deciding which combination of drugs to take. Dealing with side effects Like all medicines, the drugs used to treat HIV can cause side-effects. However, it is not inevitable that you will experience side-effects. Like all medicines, the drugs used to treat HIV can cause side-effects. However: It is not inevitable that you will experience side-effects. Most of the side-effects caused by the anti-HIV drugs are mild. Many side-effects lessen or go away with time. How often a side-effect occurs varies, but for many side-effects the risk is quite (or very) low. It is almost always possible to do something about side-effects, including changing treatment. Some side-effects are more common. These include: Diarrhea. Feeling or being sick (nausea or vomiting). Headache. Tiredness. 50 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Rash. If you are especially worried about a particular side-effect, you may want to talk to your HIV doctor about these concerns when you are deciding which anti-HIV drugs to take. It may be possible to select a combination of drugs that avoids the risk of the side-effect that you are worried about. In most cases, these side-effects are worst in the first few weeks after treatment with a drug is started. They can often be controlled with other medications (for example, paracetamol for headache or Imodium for diarrhea), and many people find that the side-effect lessens or goes away completely with time. Some people feel drowsy or dizzy, find they cannot concentrate, have changes in their mood including sadness or depression, or have sleep problems, when taking this drug. These sideeffects are most likely to occur when treatment with the drug is first started. Often, they then lessen or go away. Some people find that they can reduce the problem by taking their medication two hours before going to bed, and by not taking the drug with fatty food. Anti-HIV drugs can sometimes cause longer-term side-effects. For example, some cause increased cholesterol and other blood fats, or disturbances in the functioning of the liver. Lipodystrophy (body fat changes, such as losing some fat from your face, legs, arms or buttocks, or gaining fat elsewhere) is a side-effect of some of the anti-HIV drugs. These drugs are avoided as much as possible for long-term use. You will be monitored for these and other side-effects as part of your routine HIV care. Your HIV treatment is meant to improve your health, so it is important to remember that you do not have to put up with side-effects. It is nearly always possible to do something about them. But for this to happen, it is important that your HIV doctor knows that you are experiencing problems. So it makes good sense to tell your doctor if side-effects are making your life difficult. In rare cases, people can develop a serious allergic reaction to a drug. You will be told about the sort of allergic reaction that might occur and what symptoms to look out for before you start treatment with the drug. Contact your HIV clinic immediately, or go to the Accident and Emergency department of your local hospital, if you develop any of these symptoms. Although it may be tempting, do not stop taking your medication, skip doses, or reduce the number of pills that you take without first speaking to your doctor. You could develop resistance to several drugs that way. It is better, with your doctor, to plan how you can safely switch to a different treatment. Staying proactive Taking HIV treatment is just one of the things you can do to help keep yourself healthy. Looking after your general physical and mental health, and your emotional wellbeing, is also very important. If you stay in touch with your HIV clinic, you will get regular medical monitoring. This can help spot any potential problems, so you can receive the most appropriate treatment and care. Try and be as honest as you can with your doctor about any symptoms you are experiencing and about your lifestyle. This will help ensure that you get the care that you need. If you are living with HIV try to establish with a doctor (GP). You will still get your HIV treatment and care from your clinic but GPs are often best placed to look after your other day-to-day health needs, are experienced in looking after people with long-term health conditions. GP practices often provide services that your clinic does not. On a day-to-day level, you can help look after your health by: Eating a good diet – this should include plenty of fresh fruit and vegetables, but only moderate amounts of fats and sugars. Getting enough sleep. 51 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Exercising regularly. Talking to someone about your feelings and the issues in your life. Stopping (or not starting) smoking. Watching how much alcohol you drink. If you use recreational drugs, be careful about their use. Looking after your sexual health. Both your HIV clinic and your GP can provide information, advice and help about living a healthier life. It is good to know that a lot of emotional and mental health support is available, either through your clinic, your GP or through local HIV organizations. Changing your treatment You might find that you need to change your HIV treatment but before you do make sure that you talk to a health professional. There may be a problem with the drugs you are currently on if: They are not keeping your viral load down. Your virus is resistant to them. The side effects are too difficult to deal with. The drugs have to be taken at times that don‘t suit you. The rules about taking the drugs with or without food are hard to follow. They don‘t interact well with drugs you take for another condition. In these circumstances there is probably a better combination available - in other words, one that will suit you better and give better results. But to find the right one, you will need to work closely with your doctor. Now more than ever, it is essential that you talk honestly with your doctor about any problems you have had with taking the drugs at the right time.If your doctor understands your lifestyle, it will be easier to choose a combination that is not too difficult to take. It is likely that your doctor will carry out a resistance test, to check which drugs will work best against the virus you have. Before you switch, make sure you know about the side effects that new drugs could have. There is no point changing treatment if the new drugs are even harder to take. When changing drugs, you normally change all the drugs in the combination, not just one or two. HIV treatment and taking other drugs Taking two or more different drugs together (whether they be prescription or over the counter) can affect the way one or more of the drugs works in your body. This includes combinations of prescribed drugs with other prescribed drugs, medicines you can buy over the counter, herbal and other alternative remedies, and recreational drugs. Some of these interactions can happen with anti-HIV drugs. These interactions can mean that you do not have enough of a drug present in your blood for it to work properly. If this happens with anti-HIV drugs, it can risk the development of resistance. Or it can mean that you have too much of a drug - then there's more of a chance of side effects developing. Some interactions can be very dangerous, making one or both of the drugs toxic. Interactions are one of the reasons why it makes very good sense for your doctor and pharmacist (and any other medical professional who provides you with medicines) to know about all the medicines and drugs you are taking. There are interactions between some anti-HIV drugs and every day, over-the-counter medicine that it is important to be aware of. These can include indigestion remedies, antihistamines and cold and flu remedies. It always makes good sense to read the leaflet that comes with all 52 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives medicines as this will include information about possible drug interactions. You can also ask a pharmacist about possible interactions. Just like conventional medicine, herbal and other alternative remedies can interact with anti-HIV drugs. You should check with your HIV doctor or pharmacist before taking any herbal remedies. Some recreational drugs can interact with some anti-HIV drugs. It is also wise to consider how recreational drug use could affect adherence to your HIV treatments as sleeping patterns and routine may well be disturbed. 53 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives PHYSICAL FITNESS Exercise is the best way to improve your cardiovascular health, and for people living with HIV, looking after the heart should be an important long-term goal. Let us start with a few questions – have you ever, or do you currently experience any of the following: Lack of appetite due to anxiety or as a side effect of medication? Regular upper respiratory tract infections (chest infections)? Fatigue performing daily activities, whether caused by medication, stress or being out of condition after an illness? Difficulty getting a satisfying night‘s sleep? Muscular wasting and/or a decrease in strength? Increase in fat and/or high cholesterol/lipid levels? High blood pressure? Stress, anxiety or mild depression? Negative feelings about yourself or your body? Decreased bone mineral density (osteoporosis? If you have answered yes to any of the above then you should know that exercise could benefit you in all these areas! Exercise can restore a person to a better state of health than before the onset of a chronic illness, can help alleviate medication side effects, and can lead to longer survival time. If you are an older adult you may find that some of the issues above are common amongst your age group, whether HIV-positive or not. However, age should not be a barrier to taking up an exercise program to combat these issues, as exercise is a great way to maintain or improve your current levels of health and fitness. It is always worth checking with your doctor whether there are any forms of exercise that would not be good for you, or for any reasons that you should not exercise. However, unless you have other conditions which might impact on your ability to exercise (joint problems, heart problems etc.), people with HIV are able to exercise exactly the same way as anyone else, and do not really need any specialist advice. Exercise does not have to be a painful experience or an annoying chore; in fact a good workout should be exhilarating and enjoyable. So instead of wondering "why exercise?" ask "why not?‖ One of the most useful things to remember is that training in a gym is not the only way to stay healthy. Instead, you can adopt the 'lifestyle approach', by incorporating your fitness routine into your daily activities. Adopting the 'lifestyle activities' approach is not about building muscles and getting ‗gym fit‘, but just means that you are able to easily manage your day-to-day activities such as carrying heavy bags of shopping or running for a bus when you need to. As long as you follow some basic guidelines, you can exercise when and wherever you like. This level of activity is purely for maintaining health and to stop the body from getting weaker, we need a minimum of 30 minutes a day moderate activity, 5 times a week. This is not as much as it sounds, given that this includes doing housework, gardening, walking the dog, playing etc. It does not have to be taken in one 30-minute session; you can break it up into 10-minute chunks if that is more manageable for you. Try modifying your daily routine to introduce some extra light exercise - walk or ride a bike instead of using public transport or a car, and walk up escalators instead of standing. We often forget that dancing is a great activity for health (as long as you do not drink so much while you are out that you negate the health benefits of dancing!). As an intermediate step, for those of you that would like more health benefits but still are not interested in going to the gym, you could consider taking up a dance class or joining 54 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives a walking group. These basic changes can yield great benefits for anybody, and you can then look at a more structured routine at the gym if you like, which will yield far greater long term benefits for your health and fitness. One common reason people with HIV give for not embarking on an exercise program is fatigue or lack of energy. Whilst it is true that HIV infection, medication and coinfections can cause a drop in energy levels, it is also important to remember that (clinically-related fatigue aside) the more energy you use, the more your body provides you with. If you have little motivation in your day-to-day life and do little, your body gets used to this and develops an idea of what levels of energy are needed to manage your limited day-to-day activities. The more you rest and sleep, the more your body will come to realize that this is what is needed. However, if you start to increase your activity levels slowly, your body will start using its energy stores more efficiently and increase its reserves to accommodate the increase in need. You will also find that the endorphins that exercise releases improves your mood and give you a postexercise high which can help you maintain the practice. A common problem is that people often throw themselves into unrealistic programs of exercise and end up injuring themselves or wearing themselves out. This in turn makes them too anxious to try again. Starting gently and easily is the best way forwards, slowly building and increasing your activity bit by bit. A good way of checking this out is to set yourself a small goal to start with, check out how long it takes you to do it and how you feel. Then, continue to do this, either going further in distance or time as you progress, until you can see the improvement you have made and feel the benefits. Once you have started exercising, maintaining it can sometimes be a challenge, so it is very important to find something you enjoy doing (or at least do not actually dislike!). If you are a sociable person, try including a friend or partner in the activity to keep you company and motivate each other while you walk, jog or cycle. Often, although self-commitment may fizzle out, you are less likely to quit if there is a commitment to someone else involved. Group activities and classes can be a good way of making and keeping a self-commitment. Having a set time and day where you play tennis or go to a yoga, aerobics or dance class provides structure and routine, and you will meet others who are trying to improve their health, and feel supported and more motivated. Finally, if you have a period where you stop exercising, the trick into getting back on track is just to do it! People often say "I will go back after my holiday", or "when the nights get darker" and use any number of excuses not to re-start. Try writing up a list of what you liked about exercising and how it made you feel, and then write another list from the negative perspective and see which one carries more weight (always remembering that the long-term benefits of exercise are not instantly noticeable, and that better health should be at the top of that benefits list!). The Essence of fitness Before you start exercising, think about what you are trying to accomplish. Setting realistic and measurable goals is a useful tool in starting and maintaining an exercise program. For example, telling yourself you are going to "start exercising and lose weight", does not give you anything precise and clear to work with, which can often be the cause of letting it drop. However, if you say "I will do 20 minutes of moderate cardiovascular exercise such as biking or walking, 3 times a week for the next 3 months, in order to lose 10 kilos", you have a clearer plan in mind. You can then adjust the goal if it seems you might not manage it exactly as hoped. 55 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Better to adjust a goal and keep on going than just feel defeated and pack it in! If you find yourself breathless at relatively low levels of activity, a cardiovascular workout would be beneficial to your heart and lungs. To be considered cardiovascular, an activity must be rhythmic and continuous over a prolonged period of time (ideally around 20 minutes at a time), such as a brisk walk, jog, swim, bike ride etc. For improvements in cardiovascular fitness, a minimum of three 20-minute sessions per week is ideal, although you can train as often as you like. Incorporating music can help you get into the workout groove and fend off boredom. If increased strength and/or muscle size is the focus then resistance/weight training is the path to follow. This encourages the body to adapt by placing an increased demand on your muscles. Your body‘s response to this new demand is an increase in strength and muscle size. This can be achieved by simply contracting a targeted muscle for five seconds or by using weights or everyday items such as paint or soup cans to contract the muscle fully. In order to achieve continued gains you need to increase the resistance or weight used over time, since your body will become accustomed to the initial starting weight and need to be constantly challenged. An important thing to remember with resistance training is that unlike cardiovascular exercise, you should not work the same muscles every day. If you work a specific muscle or a set of muscles one day, you should not work those same muscles the next day. Always take a day‘s rest between resistance training sessions so that the body has time to rest and recover. However, if you are determined to see big improvements in your body shape, you can work different muscles on different days so that daily training is possible. In order to improve overall fitness levels it is best to do a mixture of both cardiovascular and resistance training. However, please remember that if you are unwell, you should not do any strenuous exercise. Finally, flexibility is a major component of physical fitness that is often overlooked. Overworked and tight muscles are uncomfortable and can eventually cause postural problems, which is why you should always stretch muscles thoroughly (10 to 20 seconds for each muscle group) after every exercise session. This will help keep your muscles in healthy balance with a full range of movement. Whilst fat loss tends to be the main exercise goal for much of the general population, for people with HIV, there is more focus on gaining and maintaining weight than losing it. First of all, if you are still taking any of the older drugs, changing medications should stop things getting any worse. Other than this, exercise is the most effective intervention that tries to reverse the progress of lipodystrophy in relation to general body shape. Cardiovascular exercise and resistance (weight) training reduces the appearance of fat around the stomach area in men. Whilst it may not be possible to get rid of all the fat that accumulates (depending on how severe the lipodystrophy might be), reducing some of the fat and building muscle in the areas where it has been lost (arms, legs, buttocks) can reduce the severity of the condition and improve your body proportions and appearance. As exercise is an extremely effective way of reducing bad blood fats and increasing the good fats, not only does it combat the outward signs of lipodystrophy, but it also improves the inner fat issues which, although invisible, are the greater health concern in the long term. Doctors often prescribe drugs to reduce cholesterol and triglyceride levels, and whilst these are effective, they can have their own side effects and are yet more pills to take. Exercise on the other hand does the same job and provides you with a health investment for the future in terms of cardiovascular risk factors, improves appetite, sleep, bone density, mood and self-esteem. If there is a better answer than this, it has yet to be found! Physical activity, exercise, and HIV 56 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Physical activity is any activity that gets your body moving. It includes any activity that is part of your daily life – from sweeping and cleaning to carrying groceries, gardening, walking, dancing, riding a bicycle, lifting weights at the gym, stocking shelves in a store, or playing soccer with friends. Exercise is a type of physical activity that is planned and done on a regular basis (e.g., several times a week) for enjoyment or for improving any aspect of physical fitness – strength, flexibility, or endurance. There are two main types of physical activity or exercise for adults: aerobic (cardiovascular or ―cardio‖) and muscle-strengthening (resistance). Labeling something a physical activity or an exercise is not nearly as important as understanding that the human body was designed to move and stays healthier when it does. In other words, being active with your body – whether it is through small amounts of activity throughout the day or scheduled blocks of time for more strenuous movement – contributes to a longer, healthier life. Even small changes woven throughout the fabric of your normal life can greatly enhance your activity level and your health: taking the stairs instead of the elevator, carrying instead of wheeling groceries through the store, walking a short distance instead of driving the car. It is important to know that neither expensive equipment nor complicated techniques are necessary in order for you to be physically active. Aerobic activity can be as simple as walking or cleaning your home with some added zest. If it is unsafe or uncomfortable outside, try walking the stairs in your building or stepping up and down off the first step of a sturdy step-stool.Muscle-strengthening activities can be simple, too. All it takes is your body and a floor – for sit-ups, push-ups, or deep-knee bends. If you want to lift weights, try cans of food, jugs of water, or a spare brick. There are many ways to be safely physically active without spending a lot of money or going special places. Benefits of Exercise and Being Physically Active There are many ways in which physical activity can improve your health – it can build and maintain muscle, increase your endurance, and strengthen your heart. In addition, there are many benefits of exercise that are especially helpful for people living with HIV. Being physically active and having an exercise routine can: Increase muscle mass and prevent muscle loss. It is important to note that women rarely ‗bulk up‘ or build large muscles without serious weight training regimens over long periods of time. Women‘s bodies have low levels of testosterone – the hormone that can lead to bulky muscles. Also, many exercises can tone existing muscle without adding bulk. Reduce fat around the waist. Lower total cholesterol and LDL (the ―bad‖ cholesterol) Raise HDL (the ―good‖ cholesterol) Lower triglycerides (a type of fat in the bloodstream) Help control blood sugars Reduce depression Strengthen bones (help prevent bone disease) Strengthen the immune system Improve sleep quality Reduce stress Give you more energy throughout the day 57 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives There is also a connection between muscle mass and immunity. People who exercise often have higher CD4 counts and fewer side effects from HIV and HIV drugs. Because powerful HIV drugs allow many HIV+ people to live long, full lives, many of the medical problems facing people living with HIV have more to do with diseases of aging than HIV-related illnesses. Being physically active is important in preventing aging-related health issues. In addition to the benefits listed above, being physically active lowers your risk for: Breast cancer Heart disease Stroke High blood pressure Metabolic syndrome (including diabetes) Colon cancer Types of Physical Activity There are two types of physical activity that adults need each week to improve their health – aerobic and muscle-strengthening activities. Aerobic (Cardiovascular, “Cardio”) Activity Aerobic exercise uses oxygen to burn fat in your body. This is why people who are trying to lose weight often do a lot of aerobic exercise. It is also called cardiovascular exercise, because it raises your heart rate and makes your heart stronger. Besides burning fat, it can increase your endurance so that you do not get tired as quickly when you are active. Aerobic exercises can also lower cholesterol, triglycerides, and blood sugars. Aerobic activity is often described in terms of its intensity, or how much effort it takes to do something. During moderate intensity activity, your breathing and heart rate become a bit higher and you will likely be a bit sweaty at the end. Another way to think of moderate intensity activity is any activity during which you can talk but not sing. During vigorous intensity activity, a person cannot say more than a few words without pausing for a breath, since vigorous effort causes your heart rate and breathing to increase substantially. Examples of moderate aerobic activity include: Brisk walking (> 3 miles per hour, but not race walking) General gardening (e.g., weeding, raking leaves) Biking (< 10 miles per hour) Water aerobics Examples of vigorous aerobic activity include: Running, jogging, or race walking Swimming laps 58 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Jumping rope Aerobics (including dancing) Heavy gardening (e.g., digging holes, hoeing) Cross-country skiing To see substantial health benefits, adults need to do at least: 150 minutes (two hours and 30 minutes) of moderate intensity aerobic activity per week OR 75 minutes (one hour and 15 minutes) of vigorous intensity aerobic activity per week OR an equivalent combination of moderate and vigorous intensity aerobic activities Aerobic activity should be done for at least ten minutes at a time; however, how you reach your total weekly goal is up to you. For example, if you aim for 150 minutes of moderate activity per week, you could do 30 minutes of activity five days a week or ten-minute periods of activity 15 times throughout your week. It is important to ask your health care provider if you have any conditions that might make it a bad idea to do aerobic activity – especially muscle wasting or very little body fat. Muscle-Strengthening Activities Muscle-strengthening activities, also called weight-bearing exercise or resistance training, involve moving or resisting the movement of weight with your muscles. For most people, it is normal to have mildly sore or tired muscles after weight or resistance training. This occurs because these activities actually cause very small muscle tears that take two or three days to heal. When the muscles heal, they heal stronger. Therefore it is important for you to wait for two to three days after having exercised a part of the body before strengthening it again. This is usually the amount of time it takes for any soreness to go away. For health benefits, adults need to do muscle-strengthening activities at least two days a week at moderate to high levels of intensity. These activities should work all the major muscle groups, including the arms, legs, chest, back, and abdomen. There are several types of muscle-strengthening activities: Exercises that use body weight as resistance (push-ups, sit-ups, deep-knee bends) Working with resistance bands Lifting weights Muscle-strengthening exercise can be especially helpful for HIV+ persons because it can help prevent both muscle and bone loss. If you have had muscle loss, weight-bearing exercise is probably good for you. However, if you have osteoporosis (bone disease), weight-bearing exercise could be dangerous. It is important to ask the health care provider if weight-bearing exercise is good for you. Exercise and nutrition A healthy diet is an essential building block in making health improvements, and should be the foundation for the entire program. Exercise improves appetite and increases your need for calories, so having a healthy balanced diet is crucial. A person can be extremely advanced in their workout but not receive the full benefits because of the fuel they are using – you wouldn‘t expect a high performance sports car to run on diesel, so why would you ask your body to do the same? The general advice on what kinds of food to eat and in what proportions is exactly the 59 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives same for people living with HIV as they are for anyone else. If you are looking to reduce fat then lowering your daily calorie intake and increasing your activity levels will help get rid of those extra inches. Try especially to eat less fats, sugars and processed foods (which often contain quite a lot of both). On the other hand, if you are looking to increase weight and build muscle, then you need to ensure you‘re taking in enough calories to fuel your muscle growth. Since protein is needed to build muscle, some people buy supplements such as protein shakes, to help do this. However, independent research shows that a healthy balanced diet contains enough protein to build muscle and that supplements are not really necessary. If you want specific recommendations on healthy eating, ask at your clinic to speak to a dietician. Generally, you should allow at least an hour after a large meal before exercising, unless you are taking the 'lifestyle activities' approach of moderate exercise, in which case a walk after a meal would be a great idea. It is equally important not to exercise on a completely empty stomach, though. Eating a light snack or some fruit before exercising is fine and will help maintain your energy levels. You should also have a snack afterwards to replenish your energy levels. You will hopefully already know the importance of drinking fluids, especially when on medication. However, given the increase in body temperature during exercise, you will need to drink more to hydrate your body, which means drinking more fluid than your recommended 1.2 liters (6-8 glasses) a day. Always ensure that you have water before, during and after a workout - try not to wait it until you are thirsty before having a drink. Other Types of Physical Activity There are other types of exercise or movement that can improve your health as well. Activities that improve flexibility are important, especially as we age. Things like stretching and yoga can help prevent stiffness and increase the range of motion in joints. Flexibility exercises can help your joints, decrease back pain, increase the flow of blood and nutrients to the tissues, and decrease the likelihood that you will injure yourself doing other forms of exercise. Yoga is a form of physical activity that combines movement with poses and attention to the breath. It can improve physical qualities such as strength, flexibility, balance, and endurance. It can also reduce stress, anxiety, and depression. T‘ai chi is another activity that involves movement and attention to the breath. T‘ai chi is a low-impact, self-paced system of gentle physical activity and stretching. It can reduce stress, improve balance, and foster serenity. Starting a New Physical Activity Program Speak to your health care provider about what types of physical activity are best for you Record your weight and the measurements of your arms, legs, chest, stomach, and hips before starting your exercise program. Set realistic goals for yourself. Setting and achieving small, measurable goals is a good way to build toward larger goals. Find an exercise buddy. Becoming physically active with a friend can keep you motivated and less likely to skip workouts. Start slowly. Do what you can, but do not overdo it. Be patient with your body and your workout. When starting aerobic activity, walk or jog at a pace where you can talk but are not out of breath. You may walk/jog for ten minutes and slowly add five minutes to your work out until you are up to 30 minutes or more several times a week. 60 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives When starting muscle-strengthening activities, use slow, controlled movements. Lifting or dropping weights quickly can be dangerous and will not help build muscle. Stay hydrated! Remember to drink a lot of water before, during, and after your workout. Eat well! Good nutrition is important to staying healthy and giving you the energy you need to be physically active. Wait two hours after a full meal before exercising. If you are able, try hiring or talking to a certified fitness trainer to help you develop a good program Do not exercise when you are feeling sick (feverish, vomiting, dizzy, diarrhea, etc.) Becoming physically active requires commitment. It may take a while for you to reach your weekly goals, but do not give up! You and your health – and those who depend on it – are worth the time and effort it takes. SMOKING AND TOBACCO USE Smoking and using smokeless tobacco products like dip, snuff, or chew can seriously harm your health. Quitting smoking or other tobacco products can stop, and in some cases reverse, these harmful effects. While quitting smoking or smokeless tobacco is not easy, it is often the single biggest thing you can do to improve your health. You can do it – and there are many resources available to help you. Cigarette smoking is a dangerous habit even for you in perfect health. However, the risks involved with smoking seem greater for one living with HIV. Many people living with HIV rarely worry about the serious illnesses that smoking might cause because they do not expect to be alive long enough to get them? Now that HIV positive people live longer, healthier lives, it is important to pay attention to issues that affect your long-term health. Smoking cigarettes may affect HIV in several ways: Less successful HIV drug therapy: smoking may cause HIV drugs not to work as well as they should More likely to experience side effects of HIV drugs Lower CD4 counts Greater chance of developing opportunistic infections (OIs) 61 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Higher rates of HIV transmission: damage to blood vessels caused by smoking can create tiny cuts in the mouth, making it easier for the smoker to get HIV from another person Smoking is very bad for your heart. Smoking causes your blood vessels to constrict, or get smaller. This reduces oxygen flow to the rest of your body, raises your blood pressure, and makes your heart work harder. Many HIV positive people have high levels of lipids (fats or fatlike substances) such as cholesterol and/or triglycerides in their blood because of HIV disease and certain HIV drugs. If you have too much cholesterol in your blood it can build up in your arteries, forming plaque. Smoking also makes your blood vessels stickier. These smaller, stickier blood vessels are more likely to get clogged with plaque than healthy blood vessels. Clogged blood vessels can cause a heart attack or stroke. Smoking uses up your body‘s levels of vitamins and minerals called antioxidants. These micronutrients are responsible for protecting the body against heart disease and cancer. Of the several thousand chemicals in tobacco smoke, at least 69 are known to cause cancer. There is a strong link between cigarette smoking and lung cancer. Lung cancer is very serious and usually fatal. Lung cancer is much more common in HIV+ smokers than HIV-negative smokers. HIV drugs may play a role in increasing lung cancer risk, or that HIV attacking the immune system may leave the body less able to fight off cancer. In addition to lung cancer, smokers are also at higher risk for: Cervical cancer Uterine cancer Cancer of the mouth, throat, voice box, and many more Smoking damages the small air sacs in the lung called alveoli. It is therefore the main cause of chronic obstructive pulmonary disease (COPD), which includes emphysema and chronic bronchitis. Smoking can also make asthma worse, and can increase the risk of respiratory infections. This is especially important for people with low CD4 counts. Smokers are more likely to get certain OIs than non-smokers. Smoking increases your risk for developing: Pneumocystis pneumonia (PCP) Tuberculosis (TB) Cryptococcal meningitis Thrush Cervical cancer Anal cancer There are additional concerns that women who smoke may face. First of all, smoking increases the likelihood that a woman will have trouble getting pregnant. It also decreases a man‘s sperm count and leads to abnormally-shaped sperm. If a woman smokes during pregnancy, she increases the chances of miscarriage, prematurity (born too early), having a low birth weight baby, and stillbirth (born dead). Smoking may also increase a woman‘s chances of giving HIV to her baby during delivery. Children born to women who smoked during pregnancy or are exposed to smoke in the home (second-hand smoke) are more likely to develop sudden infant death syndrome (SIDS). Children who are around parents who smoke are more likely to suffer from asthma, colds, and ear infections. Also, smoking is a major risk factor for osteoporosis (bone disease). This is in addition to the risk of bone disease already associated with being HIV+ and being a woman. Finally, smoking can put a damper on your love life by causing impotence (inability to maintain an erection) in men who smoke or breathe secondhand smoke. No matter how long you have been smoking, quitting can greatly improve your health. Within 24 hours your blood pressure 62 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives and heart rate drop, and your risk of heart attack and stroke begin to go down. Within several months, you can have better circulation and lung function. Over several years, you can greatly reduce your risk of lung cancer and heart disease. Women who quit at age 35 will live an estimated eight years longer than continuing smokers. People who quit at age 50 are half as likely to die early of smoking-related causes than those who continue to smoke. Quitting smoking or going tobacco-free has other benefits as well: Improved sense of smell and taste Healthier-looking skin Whiter teeth, healthier gums, and fresher breath Increased ability to participate in physical activities (exercise, playing with your children, home projects) Economic savings: no more money spent on tobacco products; money saved on health insurance premiums No more restrictions: as more places ban smoking (restaurants, airports, malls, parks), smoke-friendly spaces are harder to find Tools for quitting smoking There are several things that are helpful to understand if you are thinking about quitting smoking or smokeless tobacco. The first has to do with why it is so hard to quit and to stick with it once you have quit. Nicotine is a naturally occurring substance in the tobacco plant. It is addictive, just like heroin and cocaine. After smoking regularly for some time, people become physically and emotionally dependent on nicotine. In order to quit, both the physical and emotional dependency must be addressed. The physical dependence causes uncomfortable withdrawal symptoms such as anxiety, irritability, impatience, restlessness, trouble concentrating, dizziness, trouble sleeping, depression, headaches, and increased appetite. These symptoms usually are at their worst 2 to 3 days after quitting and gradually get better over several weeks. It may be easier to stay quit if you know in advance how you may feel and how long you may feel that way. Overcoming the emotional dependence on tobacco use can be just as difficult for some people trying to quit. For many, smoking becomes part of their daily routine, whether it is a means of relaxing or handling anxiety, boredom, or stress. Often, smoking or using smokeless tobacco is associated with triggers – particular emotions (e.g., anxiety) or activities (e.g., having a cup of coffee, socializing with friends) that give you the urge to smoke. Knowing your triggers and how to avoid them can be a key part of successful quitting. Quitting smoking and smokeless tobacco products is not just a matter of willpower. It is important to discuss your plan to quit with your health care provider. She or he should be encouraging, identify local resources, and suggest appropriate medical therapies to help you quit. There are several tools available to help you quit: Nicotine replacement therapy: this is used to help ease withdrawal symptoms while breaking the smoking habit. Afterwards, the dose is gradually reduced and eventually stopped. Nicotine replacement therapy is available in several forms: Transdermal patches (Habitrol, Nicoderm, Nicotrol): patches are worn on the arm or torso, and nicotine is absorbed through the skin Gum (Nicorette): nicotine is absorbed through the lining of the mouth; recommended dose is dependent on the amount of tobacco used Lozenges (Commit): hard candy that is sucked slowly and absorbed through the lining of the mouth 63 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Inhaler: a puff from the inhaler puts nicotine into a vapor that is absorbed in the mouth; some smokers find it helpful that this method is the most like smoking a cigarette; available by prescription only Nasal spray: spray of nicotine into nostrils; available by prescription only Anti-smoking medications: Zyban (buproprion): originally an anti-depressant named Wellbutrin, this drug reduces the urge to smoke; available by prescription only Chantix (varenicline): reduces withdrawal symptoms and the pleasure associated with smoking; available by prescription only Acupuncture: an alternative therapy that involves placing very small needles around the outer ear to reduce cravings and promote relaxation Hypnosis: or hypnotherapy, involves reaching a state of deep relaxation in which one is open to suggestions for behavioral change (such as quitting smoking Counseling and Support: many people find it helpful to have professional counseling or the organized support of others when quitting. Many places have organized support groups and smoking cessation classes. Cigarette smoking is a health risk that you control, and quitting smoking is probably the single biggest thing you can do to improve your health. Smoking is a hard habit to break. It gets more difficult the longer and more that you smoke. If you tried to quit before and began smoking again, do not worry. It takes many people several tries before they quit for good. If you feel you are unable to quit, just cutting down the number of cigarettes you smoke can be beneficial to your health. Even though giving up smoking may be one of the hardest things you ever do, it can also be one of the best things to do for yourself, your health, your finances, and your family and friends. You deserve to be supported through this difficult time. Talk to your health care provider and choose the method(s) that work best for you. Injection drug use and HIV transmission Sharing needles, syringes, and drug injection equipment or "works" (including cookers and cotton) allows HIV to be spread from one person to another. Blood from a person living with HIV (HIV+) can remain in or on a needle or syringe and then be transferred directly to the next person who uses it. HIV-infected blood can also find its way into drug solutions through: Using blood-contaminated syringes to prepare drugs Reusing water Reusing bottle caps, spoons, or other containers ("cookers") used to dissolve drugs in water and to heat drug solutions Reusing small pieces of cotton or cigarette filters ("cottons") to filter out particles that could block the needle Injection drugs users can reduce the risk of HIV infection in the following ways: Using drug treatment programs to get help with quitting Using a new, sterile needle and syringe every time and not sharing needles, syringes, cookers, or cotton with others Using needle exchange programs to get new unused needles and syringes, etc. If new, unused needles and syringes are not available, cleaning the ones that have been used thoroughly before using them again with another person. 64 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Stopping injection drug use altogether is probably the best thing you can do for your health. This may be an incredibly hard thing to do and it may not work for everyone. However, it will get rid of all the risk of HIV infection that comes from sharing contaminated needles, syringes, cookers, and cottons. If you do inject drugs, it is best to use a new, sterile needle and syringe every time you inject and do not share needles and syringes with others. You might not think of yourself as having "shared" a needle and syringe if you shared it with a close friend or acquaintance. But sharing needles and syringes with friends can be as dangerous as sharing with strangers. Street sellers", of needles and syringes may repackage used needles and syringes and sell them as sterile when they are not. Do not assume a needle and syringes are new, even if they seem to be packaged as new. Obtain needles and syringes from reliable sources of sterile needles and syringes, such as pharmacies. In many parts of the globe, you can purchase sterile needles and syringes without a prescription from a local pharmacy. If you must share needles and syringes because new, unused ones are not available, the risk of infection can be reduced by cleaning them in bleach and water immediately after use and just before reuse. Keep in mind that cleaning with bleach does not make re-using the equipment risk-free. However, it is an important tool to reduce the risk of infection. For effectiveness, you must be consistent and careful while in accordance with the cleaning procedures listed below: You can substitute hydrogen peroxide or rubbing alcohol if you do not have any bleach. Use hard alcohol, not beer or wine, if that's all you have. You can improve cleaning effectiveness by taking the set apart, removing the plunger from the barrel and soaking them in bleach for at least 30 seconds. Never shoot or drink the bleach. If the cooker (spoon) must be reused, soak it in bleach for at least 30 seconds and then rinse it with clean water. Since bleach loses its effectiveness with exposure to light, store all bleach for cleaning needles and works in a container that does not let light pass through. Injection drug users are also at a high risk for contracting hepatitis B (HBV) and C (HCV), both of which are diseases spread through blood that damage the liver. Hepatitis is easily spread through sharing needles and other injection supplies, such as cookers, cotton, and ties. Cleaning your skin prior to injecting is important. Also make sure you throw away alcohol pads and cotton wipes so that no one else touches them. Wipe down surfaces when possible before injecting. Cleaning your injection drug equipment with bleach according to the directions listed above can kill HBV; it is unclear if it can kill HCV. The best way to prevent hepatitis is to use a new needle and syringe each time, and never share any part of your works. Get vaccinated against hepatitis A and B to prevent infection with these two types of the virus; there is no vaccine to prevent hepatitis C. Sharing a needle, syringe, or any related equipment for any use, including skin popping, injecting steroids, tattooing, and body piercing, can put you at risk for HIV and other blood-borne infections. If you plan to have body piercing or get a tattoo, make sure you go to a qualified technician who uses sterile equipment. If you use needles for any reason, think about ways to reduce or get rid of the risk of spreading diseases. The safest thing to do is to stop injecting drugs altogether. If this is not possible right now, get new, sterile needles each time you shoot up or find a needle exchange program. If you have to share, thoroughly clean your needles and works with bleach and water after each use and before 65 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives reusing. If you are at risk through injecting drugs either now or in the past, get an HIV and hepatitis test. You can also put your sex partners at risk if you have unsafe sex, so remember to use condoms and practice safer sex. STRESS MANAGEMENT 66 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives We all experience a certain amount of stress every day. But if you are living with HIV, stress can become overwhelming. Long periods of high stress can damage your immune system and cause physical and emotional illnesses. In one way or another, stress can accelerate the progression of HIV. You will be able to manage stress better if you recognize the symptoms. Below is a list of some common symptoms. Physical Symptoms Allergies Change in appetite Back pain High blood pressure Breathlessness Chest pain Clammy hands More colds than normal Constipation Diarrhea Dizziness Fatigue Headaches Racing heartbeat Muscle tension Nightmares Rashes Restlessness Sleeping problems Stomach aches Emotional Symptoms Anger Anxiety Denial of a problem Difficulty making decisions Loneliness Nervousness Feeling powerless Feeling rejected Feeling trapped Feeling unhappy for no reason Being easily upset Worrying frequently Behavioral Symptoms Increased use of alcohol, tobacco or other drugs Neglecting your physical appearance Arguing with friends or family on minor issues 67 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Avoiding tasks and responsibilities Difficulty concentrating Crying easily Being late to work Eating too much or not enough Snapping at people Watching more TV Withdrawing from family and friends Tell your health care provider if you experience any of these symptoms, since some may have causes other than stress (e.g., side effects of HIV medications). Common Causes of Stress What are some of the things that can make you feel stressed? Health problems in the family Dealing with HIV drugs Financial difficulties Children and childcare issues Substance use Social isolation Disclosure issues Insurance worries Housing concerns Fatalism (focusing on death and dying) Chronic impatience Grief Absence of purpose and goals Lack of self-assertiveness Lack of support Poor coping skills Poor eating habits and nutrition Sleep disturbances Inadequate exercise Limited ability to care for yourself when sick Limited understanding of HIV-related health issues Poor relationship with your health care provider Dealing with Stress Stress often results from feeling that things are out of control. A key to stress management is to understand the need, help, and finding the resources that can help. That way, even if you have a lot on your plate, you will feel better able to cope with it. Make a list of the following: Areas in which you feel overwhelmed and need help Who or what can help How to access and utilize available services Some ministries publish books on resources and agencies that are available to the public. Some organizations have an information and referral service that can help. Often a caseworker or 68 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives advocate at the AIDS service organization can help to sort through the information. What kinds of free or low cost services can help with stress? It depends on where you live, but some of them include: medical services, counseling and psychological help, child care, taxi rides, bus passes, acupuncture, yoga classes, community college classes, massage, support groups, HIV positive dating services, free computers, legal services, drug and alcohol programs, etc.Apply as many programs, agencies, or services as you can and do not feel guilty about accepting money for services. That is what they are there for. If there are limits to the number of services you can receive from a certain agency, choose the most important or necessary services first. It may take some time to fill out and process all the paperwork, but it will be worth it in the long run. Do not forget about friends and family. If someone offers help or asks you what you would like for a holiday or your birthday, speak up! If what you really need is someone to look after the kids for a weekend or help pay your rent, ask. The worst that can happen is they will say no. Another key to dealing with stress is learning the value of self-care. You may consider taking time to exercise, getting a massage, or talking with friends too selfish. But if you become overwhelmed by stress, who will tend to your responsibilities? Many HIV positive people are too busy caring for kids or partners to notice that they ―burning out‖ mentally, physically, or emotionally. Depression Long periods of high stress can lead to depression. Sleep problems, changes in appetite, low sex drive, decreased energy, loss of interest in activities, feelings of guilt or worthlessness, difficulty concentrating, and thoughts of killing yourself are all symptoms of depression. Depression is often undiagnosed and untreated in HIV+ people because many of the symptoms are common to HIV disease or HIV drugs. Over half of all people living with HIV experience depression at some point in time.Women are twice as likely as men to become depressed, regardless of their HIV status. Making sure you are mentally healthy is important, as depression can be a major reason that you do not take your HIV drugs regularly. Depression can be treated through therapy (individual or group), medications, or alternative therapies. If you think you are depressed, talk to your health care provider. Everyone has different stressors in their lives and everyone finds different methods effective in dealing with those stressors. Look for stress-reducing techniques that work for you. Here are some ingredients for consideration: Talk about it: a friend or family member may help you sort out your feelings and get a new perspective on problems Join a support group like for HIV positive persons Get regular exercise Change your own outlook and actions, rather than trying to change others Keep a journal Practice assertive communication (learn how to say no to things you do not want to do and yes to things you do want to do) Get enough sleep: most people need about six to nine hours of sleep at regular times Take a break and treat yourself Practice hypnosis, biofeedback or massage to relieve tension Listen to music Try relaxation techniques such as meditation, deep breathing, or visualization: Mindfulness meditation may prevent CD4 cells from decreasing when experiencing stress. 69 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Eat healthfully: fuel your body with good foods that will help it to remain strong. Remind yourself of your accomplishments Try to find the positive aspects of change Try to look back on a crisis as a learning opportunity Alternatively, try to approach your health care provider to talk about stress and how it affects you. It is not a sign of weakness to care for you mentally or physically. Consider seeing a therapist or counselor if stress gets out of hand. Depression, women and HIV In general population, women are two times more likely to be depressed than men. While it is not clear why women suffer from depression so much more than men, there are several potential contributing factors. One reason used to explain the high rate of depression among women is the burden many women bear as the primary caregiver of family members. Often, women care for others and not care properly for themselves. Other factors that may lead women to feel depressed include having a lower household income, less education, less social support, and a greater chance of being physically and/or sexually abused. Women living with HIV are even more likely to suffer from depression than women in the general population. Although many HIV+ people live long, healthy, and full lives, learning that you are HIV positive is life-changing news that can be very difficult to hear. Some people feel overwhelmed, helpless, or unable to cope with an HIV diagnosis. Others are afraid for their future health, or of disclosing their HIV status to friends and family. The stigma that many HIV+ women experience may lead to social isolation and feelings of loneliness. All of these feelings – helplessness, anxiety, and loneliness – are key components of depression. Many HIV positive women experience large life stressors such as racial discrimination, poverty, violence, and single parenthood which can contribute to depression. An HIV diagnosis can simply add the burden to the chances of developing depression. There is a direct connection between depression and reduced health for those living with HIV. Specifically, HIV positive women who are depressed seek HIV care less often, have more trouble sticking with their HIV drug regimens, and have more rapid disease progression. If you are experiencing symptoms of depression, you may miss doses, take the wrong dose, or take the dose with the wrong food or at the wrong time. Not taking your HIV drugs regularly can lead to the development of resistance, which makes HIV medications less effective at fighting the virus. This can cause your CD4 cells to go down and/or your viral load to go up. Even among HIV+ women with similar CD4 counts and viral loads, being depressed can double the likelihood of dying compared to having few or no symptoms of depression. For women who make contact with a mental health provider, the risk of death is halved. It is important that depression be diagnosed and treated as quickly as possible to avoid serious problems. Being depressed, in everyday language, occurs when someone feels down, sad, blue, unhappy, or hopeless. These are all normal feelings, and almost everyone experiences them at one time or another. Receiving and living with a diagnosis of HIV can be stressful, overwhelming, and fearful at times. So it is not unusual for HIV positive people to feel down or anxious sometimes.If these feelings are overpowering, disabling, or long-lasting, however, they may be a sign that you are experiencing a condition known as depression. Compared to sadness, depression is more intense, lasts longer (more than two weeks), and interferes with your day-today ability to function. In medical language, depression is a diagnosis based on having a certain number of specific symptoms. Depression is not a normal part of being HIV positive and can 70 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives cause some serious health problems. If you have any of these symptoms or are unsure if what you are experiencing is normal, it is important to talk to your health care provider. Symptoms of depression include: Changes in appetite or weight Aches or pains for no clear reason Feelings of sadness, guilt, hopelessness, and/or worthlessness Irritability; getting into arguments easily Lack of interest or pleasure in activities that usually interest you Low sex drive Difficulty making decisions or concentrating Changes in sleep patterns Fatigue or loss of energy Thoughts of harming oneself or committing suicide If you are thinking of hurting yourself by committing suicide, please tell someone immediately. In addition to the symptoms listed above, you may also notice yourself doing some of the following if you are depressed: Not taking care of yourself in terms of grooming, dressing, and personal hygiene Skipping or not going to work; calling in sick Being very critical and down on yourself Not talking to or going out with friends Not pursuing-doing your usual social activities, hobbies, or recreations Crying or feeling like crying more often than normal, and often without knowing why Using alcohol or other recreational drugs more than usual Sometimes substance use hides depression. This happens when people try to ―self-medicate‖ by using drugs or alcohol to try not to feel the pain of what troubles them. If you feel that an issue, such as depression or anxiety, causes or adds to your substance use, ask your health care provider or AIDS service agency for a referral to a mental health provider. Treatment Options-Depression The good news is that depression is treatable. Treatments include psychotherapy, social support, medication, alternative therapies, or any combination of these. While it is true that depression can get better on its own, this can take months or even years. Treatment will likely shorten the time it takes for you to feel better and may help to stay on your HIV drugs, and keep from losing a job, a relationship, or even your life. Various mental health professionals can provide psychotherapy, also known as ―talk therapy‖ or personal counseling. Psychotherapy involves talking to a trained professional about what you are experiencing. The therapist provides support and helps you to understand what is troubling you. While most psychotherapy occurs one-onone, group therapy is also helpful for some people. Some of the mental health professionals who provide psychotherapy include: psychologists, psychiatrists, social workers, marriage and family therapists, mental health counselors. It may also be helpful to seek the support of other HIV+ persons through support groups or peer counseling from friends and family to avoid depression or cope better with it. Contact with others helps prevent feeling lonely and isolated. Friends and family can also provide emotional support, which is very important for people living with a serious illness like HIV. Members of a social support network can help with chores like shopping or housework and act as caregivers if 71 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives you get sick.Antidepressant medications are often prescribed for depression or anxiety and reduce symptoms in some people. Care should be used when taking antidepressant medications with HIV drugs. Many of the popular kinds of antidepressant and anti-anxiety drugs can interact with some HIV drugs. It is important to talk to your health care provider before starting any new medications. Meditation, massage, yoga, breathing, and relaxation exercises are all alternative therapies that may help you feel better. Acupuncture and acupressure therapies may help reduce stress and improve your mood. Mindfulness techniques help get back in touch with what makes life worth living and avoid going into downward mood spirals. Good nutrition and exercise are beneficial, no matter which treatments you choose. Talk to your health care provider about depression, especially if you are experiencing symptoms or having trouble sticking to your HIV drug regimen. If you are suffering from depression, ask for a referral to see a mental health care provider. Mental health care (including psychotherapy, social support, medication, and alternative therapies) can not only improve your adherence to HIV drugs, but also improve your health and quality of life. Many people do not believe in the value of mental health treatment. You or those you love may have heard that people who see therapists or take antidepressants are ―crazy,‖ or weak. Try not to let these judgments keep you from getting treatment that will make you feel and live better. When we experience physical problems, it is best to get treatment. If someone breaks her leg, we encourage her to see a health care provider to get the leg checked and treated so it heals properly. Similarly, when we experience emotional difficulty, there is no need to suffer when effective treatment is available. 72 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives SOCIAL & LEGAL ISSUES IN HIV/AIDS Lasting Power of Attorney (LPA) When you become too ill to make decisions about your health, welfare or finances, this responsibility can be delegated to another individual. Any person, with or without HIV, could need someone else to make important decisions on your behalf if you lose consciousness due to illness or injury. In a person with HIV or AIDS, this may become necessary if psychiatric complications occur. Better treatment means this is far less common than in the past but you, living with HIV may still develop subtle difficulties with logic, memory, concentration and communication or more serious psychiatric problems such as HIV-related dementia. You may therefore wish to appoint someone to look after your interests in the future, in case this becomes necessary at some point. You can identify this person (or more than one person) by granting them Lasting Power of Attorney (LPA). There are two types of LPA: Health and welfare Property and financial affairs Personal welfare-LPA Even if you have granted someone else LPA for your health and welfare, you still retain the right to make your own decisions about these matters for as long as you are able to do so. Doctors are obliged to ascertain your ability to consent to treatment and to obtain your views as far as is possible. If you lose the capacity to make your own choices the attorney may then make decisions regarding medical treatment.They might also make choices about the care environment (for example, deciding whether you need to go into a nursing home), visitors, and everyday matters such as diet. If you wish to give your attorney the power to make decisions about lifesustaining treatment, this must be explicitly stated in the LPA application form. Life-sustaining treatment means interventions that, if withdrawn, would be expected to lead to your death. Property and financial affairs-LPA 73 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives This type of LPA can cover matters such as paying bills, collecting income or selling property. As with a health and welfare LPA, the appointed attorney may take responsibility for your finances if you become incapable of making your own choices. However, one important difference is that you can also choose to have the financial and property LPA take effect at any time, even if you are still capable of making your own decisions. You might choose this path if, for example, you are finding your routine financial responsibilities too burdensome because of declining health. The person holding this type of LPA does not have the authority to make decisions about your health and personal welfare, although they may be consulted as part of a wider discussion about your best interests. Absence of LPA Sometimes you may clearly lack the capacity to make decisions when LPA is not in existence. No relative has an automatic right to make medical decisions for another adult but doctors can talk to your family and seek consent from the next of kin. There are no clear-cut rules on who is the next of kin, but it is usually considered to be your husband, wife or civil partner of the person, or your nearest blood relative. Alternatively, an application must be filed to the Court in the following cases: property and financial decisions decisions about life-sustaining medical treatment disagreements that cannot be resolved in other ways Where on-going decisions must be made about someone who lacks capacity. The Court can make decisions or appoint a deputy, who may be a family member or someone close to you. If this is not possible, the Court can appoint a professional deputy. Many people will be involved in making decisions for you – carers, family, professionals, and an attorney or deputy. Everyone has a duty to work together in the best interests for you. Family members – including civil partners – have a right to be consulted in such decisions. If considering preparing a LPA, then consult a solicitor. Always talk to your doctor when considering a health and welfare LPA, especially if you are thinking about giving your attorney the authority to decline life-sustaining treatment. Guardianship Although it can be an emotionally-difficult task, if you are the parent of minor children, you should make arrangements for their future care. With proper planning, you can make sure that your children will have good care in the event that you become too ill to provide for them. Arrangements for the future care of children require formal legal procedures. Therefore, you should consult the legal department at a local AIDS service organization or a private attorney. The most common ways of making plans for the future care of children are the following: Guardianship is a legal arrangement that allows you to appoint someone else to care for your children in case you become disabled. The legal guardian has the right to act as the children‘s parent and can make important decisions for the children, including decisions about health care, education, and housing. A parent should choose a guardian who is dependable and capable of providing a high level of care and stability in the children‘s life. Making someone a legal guardian of your children requires a court hearing. At the hearing, you must explain to the judge why you want someone else to take care of your children. The person 74 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives you want to name the guardian is called the designated guardian. The designated guardian must also appear in court and demonstrate that he or she is a person over 18 years old and has never had a felony conviction. The court will investigate the designated guardian to determine if he or she is qualified to provide care for the children. The court will legally recognize the guardian of your children once it is convinced that it would be in the best interest of the children. In making these arrangements, you must understand that both parents may have parental rights to care for the children, even if one parent has never been involved in the children‘s life. If you believe that placing your children with their other parent would be bad for them, you obtain a court hearing to testify why your selected guardian would be a better caregiver than the other parent. The court can make the legal decision, based on the evidence, as to which person would make a better guardian. The guardianship arrangements you make now do not have to be permanent. You can make changes in the future if you decide you would like different arrangements for your children. Standby Guardianship Standby guardianship allows a parent to take care of his or her children until he or she can no longer do so. Once the parent becomes incapable of providing care to the children, the standby guardian can take responsibility and has legal authority for some days after the parent becomes incapacitated. Within some days the standby guardian must make a legal request for guardianship of the children in order to maintain legal authority. To make standby guardianship arrangements for your children, you need to go to court. You must tell the court that you have HIV, which is a potentially-debilitating illness that could cause you to be unable to care for your minor children. You must also tell the court who you wish to name as the standby guardian. If the court approves of the guardian, the standby guardianship will be legally recognized. You can designate a guardian in your Will to make plans for the care of your children after you die. However, you should not rely on your Will to make this determination because it is not legally binding on the court. While the court would view the designation as strong evidence of your intention, it‘s possible that the court would make a guardianship decision different from the one you wanted. In most cases a parent should make formal guardianship arrangements in addition to designating a guardian in the Will. Parents can also arrange for future care of their children through adoption. With adoption, the biological parents give up all of their legal rights to their children. The adoptive parents take full parental rights and obligations, which are legally recognized and enforced. For this reason, many parents are reluctant to arrange for adoption of their children. An adoption decree would terminate the biological parents‘ rights to custody and visitation. The adoption process can be time consuming. Both biological parents, if still alive, must consent to an adoption and the court must conduct investigations regarding the suitability of the adoptive parents. If you are living with a potentially-debilitating illness like HIV, it‘s wise to make formal arrangements for the future care of your children as soon as possible. A parent‘s failure to make these arrangements will result in the state having to make decisions about the future care of the children in the event of the parent‘s incapacity or death. Unfortunately, it‘s possible that a state decision, though well-intentioned, could go against a parent‘s wishes or cause unintended confusion and disruption to the child. Look into the pros and cons of the various methods. It may help to talk to a social worker or counselor about the emotions and concerns that these issues bring up. In order to save your family, your children and yourself difficult decisions during an acute illness, it is best to make your wishes known 75 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives concerning your children‘s care sooner rather than later. If you have HIV, you have higher risks than most other people. You risk having times when you are too ill to work or manage your own affairs. You risk dying younger than others of your own age. If you do not make clear statements in advance about the sorts of health care you want to receive, what you would like done with your belongings, and whom you would like to take care of your business, your personal affairs, and your children, chances are your wishes will not be honoured. Get help. You need to know what you want to accomplish, but to be effective you should get help from a professional, usually a lawyer, to sign the right documents in the right way. Each country has different rules about what can be done, and each country has different rules about how documents have to be signed in order to be valid. If you do not have, or cannot afford a lawyer, there are plenty of ways to get help. Many AIDS service organizations (ASOs) have legal staffs trained to help you or to get you in touch with free lawyers. Each country has rules about who will inherit your property if you do not have a will. If your wishes differ from the state's rules, you almost certainly need a will. If you have children and you want to name the person who will be their guardian after your death, you also probably need a will. In a will, you can give different items of property to different people or organizations. You can name trustees to take care of property until someone is old enough to receive it. You can name the guardian for your children. You can name the person who will collect and distribute your property after your death (your "executor"). You can also state how you want your funeral and burial conducted. Medical directives, sometimes called a living will, are your statement of what kind of medical care you would like to receive. At times when you are unable to state yourself what you want done, doctors can look at the document to understand your wishes. Some people do not want to receive any care that will prolong their lives if they are in a permanent coma, have lost most of their mental functions, or will die anyway in a short period of time. Some people object to certain types of treatment or want maximum pain relief. Others want extraordinary measures taken to keep them alive, or to allow them to see loved ones before they die. All of these wishes can be put in medical directives. You can talk to your doctor about what kinds of situations you might face and try to get an idea of what you would like to be done. The best way to insure your wishes are carried out is to sign medical directives. A clear statement in writing will be given a lot more weight than any comment you may have made to a friend or even to a doctor or nurse. A health proxy, sometimes called a medical power of attorney, is a document you can use to name someone to make medical decisions for you when you are unable to make decisions yourself. It is often combined with medical directives, because you may have a clear idea what you want in some situations but may want someone you trust to step in if you face a situation you did not expect. A health proxy can also be used to say who should have first priority to visit you in the hospital, and who you want to be able to get medical information about you from your doctors. A power of attorney is a document that names someone to act as your agent to take care of many different sorts of business while you are alive. The power you grant to that person, who does not have to be an attorney, can be very broad or very narrow. You can name someone to act on your behalf for almost all your affairs, or only in specific areas like insurance or managing your bank accounts. The power you grant will be good only during your life. You can give the person power to act immediately, or you can say that the agent cannot exercise the power until a doctor says you are unable to act for yourself. The power of attorney can be very useful if you become too sick to manage your own affairs. A court may appoint a guardian if you become mentally incompetent 76 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives or otherwise unable to make your own decisions. In some cases you can sign a document that specifies whom you would like the court to appoint. This may be important if you fear that a court might appoint a family member to manage your affairs who you do not think would be the right choice.Even though it is difficult to think about serious illness and death when you are feeling well, all HIV+ people should make arrangements for the future by completing documents that express their wishes. Making plans for the future while you are healthy and clear-headed will help you keep control over your own life and protect your loved ones. HIV AND LONG TREKS Many of the-approved HIV drugs have fairly easy dosing schedules. Compared to the ―old days‖ when people took handfuls of pills three and four times a day, some people are now fortunate enough to be able to take one or two pills just once or twice a day. Whether you are taking one pill or many, it is still important to stick to your assigned dosing schedule at home or away. Travelling with your HIV drugs – and staying on your schedule – can seem a bit daunting at first, but HIV should not "ground" anyone who needs to travel for work or wants to see old friends or new places. And once you get the hang of it, it is really quite easy to manage your meds while you are on the road. It is one thing if you forget your socks, or your shaving kit, or even your address book. You can replace those items when you reach your destination or you can get along without them. You cannot get along without your medications, not even for a day, so pack them first – and pack them carefully. Count out your pills for how long you will be away and transfer 77 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives them to appropriate containers. It's wise to take a two-day backup supply of your HIV drugs with you. At home you may use a subdivided seven-day plastic pillbox to hold all your drugs, but for travel it is often more convenient to carry your pills in something smaller, like relabelled film canisters, sturdy, resealable plastic bags, or even a pocket-sized plastic tackle box. However, if you are travelling internationally or anywhere by plane, you should carry your meds in their original bottles clearly marked with the prescribing information so that security or customs will not give you too much trouble. Pack your pills in a carry-on bag – and nowhere else.There is no guarantee that your flight will depart on time or arrive on time or that checked baggage will be waiting for you at your destination. If you carry your pills on board, you can take any doses you need while on the plane and you will be prepared to take additional doses later if there is any sort of travel delay. The airline may not be able to keep to its posted schedule, but you will be able to keep to your dosing schedule and that's the important thing. Food and Water The HIV drug regimen you are on may impose dietary restrictions: certain pills should be taken on an empty stomach, others must be taken with a meal or snack, and all of them should be taken on schedule. Not all airlines offer food on flights these days, and even if they do, there is no way of knowing when you will get fed on an airplane, or whether the meal will be anything you want to eat. It‘s best to carry food with you if you need to eat when you take your medicine. The same is true for water. If you are driving or taking a bus or train, you should bring your own. However, with some of the latest airport restrictions you may have to ask for water rather than take it on board with you. Asking for water as soon as you board the plane is a good plan. If you have ever flown across the country, you may have marvelled at the time it takes a pack of flight attendants to get down the aisles of a 747 with a three-ounce beverage for each passenger. By the time your mouth turns to dust and all 32 of your pearly whites have put on their wool socks, you may as well forget trying to swallow even a single pill, unless you have had the good sense to ask for water in advance! Beyond that, it's good to drink plenty of fluids because flying is dehydrating. To varying degrees, dehydration affects all passengers on long flights, and HIV+ people need to be especially careful that they do not allow themselves to get dehydrated. So take every opportunity to get a beverage and make a point of drinking throughout the flight, not simply when you feel thirsty. Adjust your dosing schedule according to the number of time zones you cross. This sounds tricky, but it's actually quite simple. Do a little research about your destination. If you are going to another country, check if there are restrictions about HIV+ visitors or travelling with medications. You may also want to take a set of written prescriptions. If you travel to fragile countries; you may be at a greater risk of getting cryptosporidiosis (an infection caused by a parasite). Foods and drinks, in particular, raw fruits and vegetables, tap water or ice made from tap water, unpasteurized milk or dairy products, and items purchased from street vendors may be contaminated. It is best to drink filtered or boiled water. Talk with your health care provider about other precautions you may want to take when you travel abroad, especially in vulnerable countries (i.e. getting vaccines, bringing antibiotics). It is relatively easy to stick to your daily schedule of pill-taking when you are at home. You are in your usual place, your pills are in their usual place, and your routine is a familiar one. It is not so easy to remain fully compliant with your HIV regimen when you travel, especially when you travel to an unfamiliar destination. To guard against missing any of your doses, or leaving your medications behind, it helps to travel with fluorescent Post-It notes. Stick them on 78 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives the bathroom mirror, on the dresser top, on your suitcase, on your car keys, on your hotel or motel room key. Those flashes of bright colour will remind you to take every dose of every one of your medications every day and they will remind you to take your pills with you when you leave.Emergencies may make it hard for you to get and take your HIV medications on time. To avoid missing any doses, you should always have a 10 to 14-day supply of medications with you at all times. Also, natural disasters can affect air and water quality, which can be hard on people with HIV/AIDS. Make sure you adhere to safe food and water guidelines. Stock up on bottled water, non-perishable food (such as canned food), and regular first aid supplies before facing an emergency. In the event of an outbreak or epidemic, such as the flu, ask your doctor if you need to take special precautions.While planning ahead how to stick to your regimen may seem like a hassle, it will make it easier when you are on the road. Even if you are on vacation, your pills still need to keep working! So, don‘t leave home without them! EMPLOYMENT AND HIV/AIDS Most HIV treatments allow many people to live longer, healthier lives. Some people who give up their jobs because of their illness later on feel well enough and consider returning to work. Returning to work and feeling productive can improve your self-image and feel better about 79 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives yourself. However, the idea of re-entering the workforce can also trigger fears and concerns. Before you start, here are a few simple questions to help assess where a job fits into your life: What does your health care provider think about you and a job? Hint: the answer will involve trends in your CD4 count and viral load. How have you tested your stamina (energy level)? If you volunteer for an organization that you like, you might be offered a job there in future. Start with a limited schedule and build. Why do you want to have a job? ―I need money‖ is a good reason to job hunt, but not the only one. Many working HIV positive people report that the structure of a job helps with adherence to medications and maintaining a healthy lifestyle. What do you want it to do for you? Do you have enough support at home, or in your close circle of friends? If work makes it more difficult to fit in some of your daily chores, will you have help from family or friends? How will work affect your eligibility for benefits, i.e., Social Security? Start with an attitude check. If you expect to drag yourself to a hateful job with hateful people, you will probably get that. If you expect to learn, expand your skills, and enjoy the benefits of working, you will probably get that. Some considerations: The work you enjoy is energy giving-work you dislike is energy robbing. Talk with other HIV+ working people – ask about their jobs, their routines, their challenges. You might be feeling better but not well enough to return to your usual line of work. Think about returning to school or being retrained. Applying for a Job Your HIV status is confidential information. You have no obligation to disclose to a prospective or present employer. Here are the potential bumps in the road: The application form. It may provision whether you have any medical condition that might interfere with your job. Check that impulse to ―confess!‖ Many people work productively for years without HIV becoming an issue. The application form is meant for conditions that would prevent you from doing the job. Do not apply for a job you cannot do. For all other jobs: the answer is ―no.‖ The interview. A sloppy interviewer asks: ―Tell me about any medical conditions.‖ A reasonable interviewer asks, ―Why were you out of the workplace for five years?‖ Questions that dig for specific information about a diagnosis are not ethical. Reply that there is no barrier for your doing the entire job. Questions about an employment gap are scary, but you can manage. Simply say, ―I was dealing with a family health problem.‖ The pre-employment health survey that asks to list all medications. Take the form to your doctor and ask him or her to complete it. Encourage your doctor to write something like, ―(Your name) is under my care and takes no prescription medications that would interfere with her fulfilling the essential functions of this job.‖ Do not list all your medications. They are none of the employer‘s business. The pre-employment physical. If your new job requires a pre-employment physical or lab test, it is probably because the employer is trying to find out if you use street drugs. An HIV test would require your written consent and be a pointless expense. Talk with your pharmacist before you have the physical. Ask whether any of your HIV drugs would 80 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives yield a false positive drug test. If so, ask for the name of an alternate test. Tell the tester that you need the alternate test for a valid result. Do not disclose the medication or your diagnosis. Signing up for employee benefits. If you find a job with benefits, do not lie on application forms for health, life, or disability insurance. That is called insurance fraud. If you find a direct question about HIV or other diagnosis questions, ask how your privacy is protected. Turn in the form when you get a satisfactory answer. Once you find a job, remember that you were hired for your skills. Whatever you believe about disclosing your HIV status at work, keep the focus on your performance. Many HIV+ people who want to disclose at work keep a lid on the information for a few months. That gives you time to figure out how you will be treated if you do disclose. There are no automatic triggers for disclosing your HIV status at work. You are not required to disclose at work, even if: You are bleeding. You need a reasonable accommodation. Side effects made you late for work. You are up for a promotion. You need leave time to adjust to new medications. Surprised? Here are the disclosure rules. 1. You do not have to disclose. 2. A supervisor or manager is bound to keep your information private. But that is not a guarantee that he or she will obey. 3. The HR director, a shop steward, or the company officer in charge of employee relations must by ethics keep your diagnosis private. But not everyone in those roles follows the rules. 4. If you tell a co-worker, you might as well post the information on the company bulletin board. Tell all co-workers or none. You can do a lot to prevent HIV discrimination at work by learning your own rights and responsibilities. Here are some tips for employees with HIV: Requesting for a reasonable accommodation If side effects or symptoms interfere with work, you might ask for changes in your working conditions that would allow you to continue doing a good job. Suppose your medication makes you nauseated in the morning. Suppose your job could be done just as well if you came in an hour later and stayed an hour later. A change like that is called a ―reasonable accommodation‖ and there‘s a right way to ask for one. Think like an employer: what documentation and attitude would you want to see? Name the specific functional limitation you want your employer to accommodate, such as fatigue. Be specific about the change you need (rest breaks every 90 minutes). Back up your request with a physician‘s note that supports the functional limitation – but doesn‘t state the diagnosis! Make it clear that you understand the purpose of the accommodation: you still have to be able to do the whole job, even if you have to work longer hours. Give the request to the person who arranges reasonable accommodation for all other conditions. Usually that person is not your supervisor. It may be the company nurse, HR (human resources) representative, shop steward, or an officer of the company. 81 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives If you cannot do the whole job even with the accommodation, you need to think about short-term leave. Facing serious diarrhea for more than two hours when you get up in the morning The diarrhea may be an adjustment to new HIV drugs. Other than getting up two hours earlier, you could: Ask for an accommodation (later arrival time) until you and your physician can resolve the diarrhea. Back up your request with a physician‘s note. Offer to change your shift to start and end two hours later. Sometimes this is a benefit to an employer with customers in other time zones. Advise your supervisor that you have a new medication and will need frequent bathroom breaks while you adjust. Raising a complaint against discrimination Start with your own supervisor, who is responsible for stopping discriminatory behavior. No results? Go to the Human Resource Manager/Administrator or the person responsible for employee relations. No results? Go to the company Director/Manager, in writing. No results? Go to any other relevant agent like police. Document your claims and responses. Injured and bleeding and someone is trying to help Everyone should be using universal precautions by now. People administering first aid can respond to you safely if they use latex gloves and assume that you are infectious for all blood borne diseases. If you know your employer hasn‘t provided first aid training for a long time, be a pest for updated first aid training at work. You have your rights as an HIV+ person at work: Taking Care of Yourself at Work Keep track of all of your performance reviews. (You will need them if someone learns your HIV status and suddenly begins giving you poor reviews.) Think very carefully before disclosing your HIV status at work. Have realistic expectations about the possible outcome. Refuse to discuss other employees‘ medical conditions. Focus on doing a great job. 82 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives LOSING A LOVED ONE, DEALING WITH DEATH, LOSS & GRIEF Dealing with death is a life experience that no one wants to face. Life can often seem like swimming in the ocean during high tide. Even if we know how to swim and jump over the big waves at just the right time, when we least expect it-wham! We are broadsided, and find ourselves spinning and bouncing off the bottom of the ocean with a mouth full of sand. If we fight, it takes longer to get to the surface. But if we float with the current, we come right to the top. Floating when we are frightened is difficult. It takes trust and concentration. Dealing with death of a loved one is similar. In order to cope, it takes trust. Death is nearly always accompanied by questions - especially "why." Whether we are facing our own death, or death of someone we love, we want answers. Why is this happening? What did I do to deserve this? Is there life after death? The sooner we learn to float - to trust - the easier it is to discover the answers we are seeking. When dealing with death, the solution is the same whether death is our own or that of a loved one.As hard as it is to accept, we must understand that death is part of our life. It is the only thing in life that comes with 100% guarantee. It is helpful to realize that while our bodies are mortal, all human beings are eternal - our soul and spirit will never die. Our spirits - the essence of who we are - will live forever! Dealing with Death - No greater Love Dealing with death was not a problem for Adam and Eve-the first man and woman who ever lived. However, once they sinned against God, things changed. Dying was a result of Adam's sin of disobedience. We may think of death as final, but there is no end in the plan of God. We are eternal beings in His sight. Have you ever wondered why, even though your body might be aging, you do not feel "older" inside? It is because your spirit is eternal. The scriptures say that God has placed eternity in our hearts. God desires for us to spend eternity with Him, yet He has left that choice up to us. God has made all the provisions for us to be with Him forever. He has no greater love than His love for us. Dealing with death is largely influenced by what we think of Jesus Christ. It also affects where we will spend eternity. In His infinite love, God sent His Son Jesus to die for us. When we believe in Jesus Christ who died as a payment for our sins, we are guaranteed eternal life with Him forever. If you are a child of God, dying is a promotion. Do you want to be with God forever? Do you understand that the only other option is to be separated from Him forever? Jesus said, "…I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die. Do you believe this?‖ How we respond to the gift of Jesus Christ will determine where we spend eternity. God the Father loves all His creation and He waits on high to bless and redeem us. Precious in the sight of the LORD is the death of his saints. If we know Christ as our personal Savior, we need not fear dying. As for those we love, it becomes our responsibility as believers to pray for the salvation of those who do not know Him. For those who do, death is a celebration - a homecoming! As we begin to think of ourselves as eternal beings, the realization that there is a 83 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives future will help us cope with the present circumstances. We begin to ask specific questions concerning eternity. We will be separated from our earthly body and separated from loved ones? Will we see them again? How do we define separation? How do we deal with separation in life and in death? God has a plan for us here on earth. God has a plan for eternity - He reveals it to us through death. Losing someone or something you love or care deeply about is very painful. You may experience all kinds of difficult emotions and it may feel like the pain and sadness you are experiencing will never let up. These are normal reactions to a significant loss. But while there is no right or wrong way to grieve, there are healthy ways to cope with the pain that, in time, can renew and permit you to move on. Grief Grief is a natural response to loss. It is the emotional suffering you feel when something or someone you love is taken away. The more significant the loss, the more intense the grief will be. However, even subtle losses can lead to grief. For example, you might experience grief after moving away from home, graduating from college, changing jobs, selling your family home, or retiring from a career you loved. You may associate grief with the death of a loved one—which is often the cause of the most intense type of grief—but any loss can cause grief, including: Being diagnosed with HIV/AIDS Death of a pet Loss of financial stability Loss of a cherished dream A miscarriage A loved one‘s serious illness Retirement Loss of a friendship Losing a job Loss of safety after a trauma Divorce or relationship breakup Selling the family home Everyone grieves differently, grieving is a personal and highly individual experience. How you grieve depends on many factors, including your personality and coping style, your life experience, your faith, and the nature of the loss. The grieving process takes time. Healing happens gradually; it cannot be forced or hurried – and there is no “normal” timetable for grieving. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your grief experience, it is important to be patient with yourself and allow the process to naturally unfold. Myths and Facts about Grief MYTH: The pain will go away faster if you ignore it. Fact: Trying to ignore your pain or keep it from surfacing will only make it worse in the long run. For real healing it is necessary to face your grief and actively deal with it. MYTH: It’s important to be “be strong” in the face of loss. Fact: Feeling sad, frightened, or lonely is a normal reaction to loss. Crying does not mean you are weak. You don‘t need to ―protect‖ your family or friends by putting on a brave front. Showing your true feelings can help them and you. MYTH: If you don’t cry, it means you aren’t sorry about the loss. Fact: Crying is a normal response to sadness, but it‘s not the only one. Those who don‘t cry may feel the pain just as deeply as others. They may simply have other ways of showing it. MYTH: Grief should last about a year. 84 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Fact: There is no right or wrong time frame for grieving. How long it takes can differ from person to person. Stages of grief The five stages of grief are based on the feelings of a patient facing terminal illness; do not generalize them to other types of negative life changes and losses, such as the death of a loved one or a break-up. The five stages of grief: Denial: ―This cannot be happening to me.‖ Anger: ―Why is this happening? Who is to blame?‖ Bargaining: ―Make this not happen, and in return I will ____.‖ Depression: ―I‘m too sad to do anything.‖ Acceptance: ―I‘m at peace with what happened.‖ If you are experiencing any of these emotions following a loss, it may help to know that your reaction is natural and that you will heal in time. However, not everyone who grieves goes through all of these stages – and that‘s okay. Contrary to popular belief, you do not have to go through each stage in order to heal. In fact, some people resolve their grief without going through any of these stages. And if you do go through these stages of grief, you probably won‘t experience them in a neat, sequential order, so don‘t worry about what you ―should‖ be feeling or which stage you are supposed to be in. These stages should not serve as a rigid framework to everyone who mourns. The five stages of grief are never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.‖ Grief can be a roller coaster Instead of a series of stages, we might also think of the grieving process as a roller coaster, full of ups and downs, highs and lows. Like many roller coasters, the ride tends to be rougher in the beginning; the lows may be deeper and longer. The difficult periods should become less intense and shorter as time goes by, but it takes time to work through a loss. Even years after a loss, especially at special events such as a family wedding or the birth of a child, we may still experience a strong sense of grief. Common symptoms of grief While loss affects people in different ways, many experience the following symptoms when they‘re grieving. Just remember that almost anything that you experience in the early stages of grief is normal – including feeling like you‘re going crazy, feeling like you‘re in a bad dream, or questioning your religious beliefs. Shock and disbelief – Right after a loss, it can be hard to accept what happened. You may feel numb, have trouble believing that the loss really happened, or even deny the truth. If someone you love has died, you may keep expecting him or her to show up, even though you know he or she is gone. Sadness – Profound sadness is probably the most universally experienced symptom of grief. You may have feelings of emptiness, despair, yearning, or deep loneliness. You may also cry a lot or feel emotionally unstable. Guilt – You may regret or feel guilty about things you did or didn‘t say or do. You may also feel guilty about certain feelings (e.g. feeling relieved when the person died after a long, difficult illness). After a death, you may even feel guilty for not doing something to prevent the death, even if there was nothing more you could have done. 85 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Anger – Even if the loss was nobody‘s fault, you may feel angry and resentful. If you lost a loved one, you may be angry with yourself, God, the doctors, or even the person who died for abandoning you. You may feel the need to blame someone for the injustice that was done to you. Fear – A significant loss can trigger a host of worries and fears. You may feel anxious, helpless, or insecure. You may even have panic attacks. The death of a loved one can trigger fears about your own mortality, of facing life without that person, or the responsibilities you now face alone. Physical symptoms – We often think of grief as a strictly emotional process, but grief often involves physical problems, including fatigue, nausea, lowered immunity, weight loss or weight gain, aches and pains, and insomnia. Coping with grief and loss tip 1: Get support The single most important factor in healing from loss is having the support of other people. Even if you are not comfortable talking about your feelings under normal circumstances, it‘s important to express them when you are grieving. Sharing your loss makes the burden of grief easier to carry. Wherever the support comes from, accept it and do not grieve alone. Connecting to others will help you heal. Finding support after a loss, turn to friends and family members– Now is the time to lean on the people who care about you, even if you take pride in being strong and selfsufficient. Draw your loved ones close, rather than avoiding them, and accept the assistance that is offered. Often times, people want to help but don‘t know how, so tell them what you need – whether it is a shoulder to cry on or help with funeral arrangements. Draw comfort from your faith – If you follow a religious tradition, embrace the comfort its mourning rituals can provide. Spiritual activities that are meaningful to you – such as praying, meditating, or going to church – can offer solace. If you are questioning your faith in the wake of the loss, talk to a clergy member or others in your religious community. Join a support group – Grief can feel very lonely, even when you have loved ones around. Sharing your sorrow with others who have experienced similar losses can help. To find a bereavement support group in your area, contact local hospitals, hospices, funeral homes, and counseling centers. Then try talking to a therapist or grief counselor– If your grief feels like too much to bear, call a mental health professional with experience in grief counseling. An experienced therapist can help you work through intense emotions and overcome obstacles to your grieving. Coping with grief and loss tip 2: Take care of yourself When you are grieving, it is more important than ever to take care of yourself. The stress of a major loss can quickly deplete your energy and emotional reserves. Looking after your physical and emotional needs will help you get through this difficult time. You can try to suppress your grief, but you cannot avoid it forever. In order to heal, you have to acknowledge the pain. Trying to avoid feelings of sadness and loss only prolongs the grieving process. Unresolved grief can also lead to complications such as depression, anxiety, substance abuse, and health problems. Express your feelings in a tangible or creative way. Write about your loss in a journal. If you have lost a loved one, write a letter saying the things you never got to say; make a scrapbook or photo album celebrating the person‘s life; or get involved in a cause or organization that was important to him or her. The mind and body are connected. When you feel good physically, you will also feel better emotionally. Combat stress and fatigue by getting enough sleep, eating right, 86 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives and exercising. Do not use alcohol or drugs to numb the pain of grief or lift your mood artificially. Never allow anyone tell you how to feel, and do not tell yourself how to feel either. Your grief is your own, and no one else can tell you when it is time to ―move on‖ or ―get over it.‖ Let yourself feel whatever you feel without embarrassment or judgment. It is okay to be angry, to yell at the heavens, to cry or not to cry. It is also okay to laugh, to find moments of joy, and to let go when you are ready. Planning a head for grief ―triggers.‖ Anniversaries, holidays, and milestones can reawaken memories and feelings. Get prepared for an emotional wallop, and know that it is completely normal. If you are sharing a holiday or lifecycle event with other relatives, talk to them ahead of time about their expectations and agree on strategies to honor the person you loved.When grief does not go away, it is normal to feel sad, numb, or angry following a loss. But as time passes, these emotions become less intense as you accept the loss and start to move forward. If you are not feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression. Complicated grief The sadness of losing someone you love never goes away completely, but it should not remain center stage. If the pain of the loss is so constant and severe that it keeps you from resuming your life, you may be suffering from a condition known as complicated grief. Complicated grief is like being stuck in an intense state of mourning. You may have trouble accepting the death long after it has occurred or be so preoccupied with the person who died that it disrupts your daily routine and undermines your other relationships. Symptoms of complicated grief include: Intense longing and yearning for the deceased Intrusive thoughts or images of your loved one Denial of the death or sense of disbelief Imagining that your loved one is alive Searching for the person in familiar places Avoiding things that remind you of your loved one Extreme anger or bitterness over the loss Feeling that life is empty or meaningless The difference between grief and depression Distinguishing between grief and clinical depression is not always easy as they share many symptoms, but there are ways to tell the difference. Remember, grief can be a roller coaster. It involves a wide variety of emotions and a mix of good and bad days. Even when you‘re in the middle of the grieving process, you will have moments of pleasure or happiness. With depression, on the other hand, the feelings of emptiness and despair are constant. Other symptoms that suggest depression, not just grief: Intense, pervasive sense of guilt Slow speech and body movements Thoughts of suicide or a preoccupation Inability to function at work, home, with dying and/or school Feelings of hopelessness or Seeing or hearing things that aren‘t there worthlessness 87 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives The significance of antidepressants to grief As a general rule, normal grief does not warrant the use of antidepressants. While medication may relieve some of the symptoms of grief, it cannot treat the cause, which is the loss itself. Furthermore, by numbing the pain that must be worked through eventually, antidepressants delay the mourning process. If you recognize any of the above symptoms of complicated grief or clinical depression, talk to a mental health professional right away. Left untreated, complicated grief and depression can lead to significant emotional damage, life-threatening health problems, and even suicide. But treatment can help you get better. Contact a grief counselor or professional therapist if you: Feel like life is not worth living Wish you had died with your loved one Blame yourself for the loss or for failing to prevent it Feel numb and disconnected from others for more than a few weeks Are having difficulty trusting others since your loss Are unable to perform your normal daily activities HIV/AIDS CARE We all know that it is important to take care of ourselves. When we eat right, get good rest and exercise, we feel better! It is easy to know this, but harder to live by it when you are HIV positive. HIV drugs can have debilitating side effects, or simply make you tired. When you are sick, it is often even harder to take good care of yourself than when you are well. Your family needs you, your job needs you – and have a habit of putting yourself last. Learn to put yourself at the front of the line. If not first, at least nearly first! You will feel better and you will have more to give everyone else. Addiction is a serious problem in the HIV community. Using drugs or alcohol can lead to exposure to HIV, but they can also cause severe physical, social, emotional, and psychological problems after infection.Some people get infected directly through addiction behaviors, such as re-using a needle that was contaminated with HIV. Some get infected indirectly as a result of drugs or alcohol, like getting drunk, going home with a stranger, and forgetting about safer sex. Do you have a problem with addiction? Take a quick quiz to find out: The questions ask about drinking, but you can substitute the words ―drug use.‖ Have you ever felt you should cut down on your drinking? Have people annoyed you by criticizing your drinking? Have you ever felt bad or guilty about your drinking? Have you ever had a drink first thing in the morning (an eye-opener) to steady your nerves or get rid of a hangover? If you answered yes to one question, you might have a problem with drug or alcohol abuse. If you answered yes to two or more, chances are good that you are addicted to drugs or alcohol. Some HIV positive people get defensive about their drug or alcohol use. They say it is tough 88 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives living with a life-threatening disease, that they need something to help them relax, etc. But the truth is that the combination of HIV and either drugs or alcohol can be deadly, either in the short run or the long run. Why? Overdose HIV infection can make your body more fragile. You may lose muscle mass and/or body fat. You may not be able to handle the same amount of drugs or alcohol you could tolerate in the old days – and can end up in the Emergency Room or worse as a result. Non-Adherence If you are overusing drugs or alcohol, chances are high that you are not taking your medications correctly. Remember, if you take your HIV drugs incorrectly, you take the risk that your virus will mutate and become resistant to the medications. Eventually, you could end up in a situation where none of the HIV medications will work for you. Drug Interactions Have not been honest with your physician about what counter drugs you use, or how much alcohol you drink? You can end up with drug interactions. These can affect the levels of other drugs in your system – and make normal doses of medication end up as super-high or super-low in your system. Some combinations can even result in a heart attack or stroke. HIV Acceleration Some drugs, like cocaine and crack, cause HIV to progress much faster than normal. It is like stepping on the gas pedal. There drugs also make it easier for HIV to enter your brain, causing memory and other cognitive problems. Risk Behaviors When people get high or drunk, they use good judgment less often and are more likely to make bad decisions. Such poor decisions may put you in more dangerous situations (like physical or sexual assault), or lead to activities that put you at higher risk of spreading or getting sexually transmitted diseases (like forgetting to practice safer sex or use clean needles). Taking Care of Yourself So if you know you have a problem with addiction, what do you do? There is no one right answer for everyone. Each person is different. But there are two basic steps: 1. Talk to your doctor -Even if you are not ready to cut down or stop using drugs or alcohol, your HIV physician needs to know what you are doing in order to be able to treat you. 2. Consider your treatment options -Inpatient or outpatient? A mental health professional, case manager, peer counselor, physician, nurse, or substance abuse professional can help you sort through the options and make healthy decisions. Many free or low cost recovery programs are available that you may not know about. Whatever options you choose, taking the first step towards beating your addiction can be the healthiest decision you ever make! HIV/AIDS: Do’s And Don’ts When dealing with a person living with HIV / AIDS (PLWHA) the bottom line is that you must treat them, the same way out you would like it to be treated if you were infected with HIV. DOs: Sympathize and empathize with them. Provide them family and social support. 89 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Allow them to be a part of the family as he / she was prior to disclosure of the infection. Allow them to get back to their work as soon as he / she is physically fit, since HIV infection does not require special rest. Keep them engaged in some activity, as an empty mind is a devil‘s workshop. Make efforts to reduce their stress. Encourage them to exercise and meditate as these help prolong the life span. Provide them with a high protein, high vitamin diet and clean potable water (boiled). Convince them to stop all addictions such as tobacco cigarettes, alcohol or other psychotropic / recreational drugs. Register them with a health care facility for regular checks and follow up. Take immediate steps to treat even minor ailments. However, it is not necessary to disclose their HIV status to their family physician. Dispose off blood stained tampons and bandages properly, either by flushing or by disinfecting them first with detergent. Advise them to use safe sex (condoms) with their sex partner, even if partner is already HIV positive. Pursue them at any appropriate time, to make a will. Provide foster care to their children. Help fight the discrimination meted out to them by hospitals, doctors and employers. Educate family members and friends about HIV / AIDS, especially if they already know the HIV status of the patient. DON’TS: Do not accuse them for getting infected, it does not help. It only worsens the situation. Do not try to probe into when, where the person got infected. Do not make them feel guilty. Do not isolate them in their home / workplace. Do not separate them from spouse or children, since they are the best support for them. It is important for them to spend quality family time together. Do not use gloves in feeding the infected person or to wipe off his saliva, sweat, nasal secretions and tears. Do not share razors, tooth brush and other sharp objects with infected person or for that matter with anybody else. It is not necessary to wash their clothes separately. Do not disclose the HIV status of infected person to friends, employer and insurance company. Do not humiliate the infected person, his / her spouse or children Do not scare them of suffering and death. In the terminal stage, prepare them for a smooth journey to death. Do not get conned by the fake claims, false cures, witch hunters and faith healers. Wait for declaration of the noble prize for the real cure. Do not spend the entire available money limit in the first bout of illness; it may be the first of such illnesses in the pipeline. Make a proper planning of your spending capability. Do not take many relatives to visit the patient admitted in hospital. Do not test for HIV repeatedly, once the presence of infection is established it remains there forever. 90 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Getting Ready to Take Care of Someone at Home One of the best places for people with AIDS to be cared for is at home, surrounded by the people who love them. Many people living with AIDS can lead an active life for long periods of time. Most of the time, people with AIDS do not need to be in a hospital. Being at home is often cheaper, more comfortable, more familiar, and gives them more control of their life. In fact, people with AIDS-related illnesses often get better faster and with less discomfort at home provided by their friends and loved ones. If you are taking care for someone at home, remember that each person is different and is affected by the virus in different ways. You should get regular updates from the person's doctor or nurse on what kind of care is needed. Many times what is needed is not medical care, but help with the normal chores of life: shopping, getting the mail, paying bills, cleaning the house, and so on. Also remember that AIDS causes stress on both the person who is sick and on you the care taker. Caring for someone with AIDS is a serious responsibility. You will have to work with the person with AIDS to decide what needs to be done, how much you can do, and what additional help is needed. But, by rising to the challenges of caring for someone with HIV infection and AIDS, you can share emotionally satisfying experiences, even joy, with those you love. You can also find new strengths within yourself. But you need to take care of yourself as well as the person with AIDS. Every situation is different, but here are some tips to get you started. 1. First, read the available HIV/AIDS literature. Has the person living with HIV or AIDS read and fully understood it. The information in this book is for both people with diagnosed AIDS and people with HIV infection who are sick and need care, and even those who are at the risk of infection. If you have trouble understanding any of the words, see the glossary section. 2. Take a home care course, if possible. Learn the skills you need to take care of someone at home and how to manage special situations. Your local health officer, Visiting Nurses, government health department, or HIV/AIDS service organizations can help you find a home care course. 3. Talk with the person you will be caring for. Ask them what they need. If you are nervous about caring for them, say so. Ask if it is advisable for you to talk to their doctor, nurse, social worker, case manager, other health care professional, or lawyer when you need to. Together you can work out what is best for both of you. 4. Talk with the doctor, nurse, social worker, case manager, and other health care workers who are also providing care. They may need the patient's permission, sometimes in writing, to talk to you, but you need to talk to these people to find out how you can help. Work with them and the person you are caring for to develop a plan for who does what. 5. Get clear, written information about medicines and other care you will give. Ask what each drug does and what side effects to look out for. 6. Ask the doctor or nurse what changes in the person's health or behavior to watch for. For example, a cough, fever, diarrhea, or confusion may mean an infection or problem that needs a new medicine or even putting the person in the hospital. 7. You also need to know whom to call for help or information and when to call them. Make a list of doctors, nurses, and other people you might need to talk to quickly, their phone numbers, and when they are available. Keep this list by the phone or hand book. 8. Talk to a lawyer or AIDS Support Organization. For some medical care or life support decisions, you may need to be legally named as the care coordinator. If you are going to 91 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives help file insurance claims, apply for government aid, pay bills, or handle other business for the person with AIDS, you may also need a power of attorney. There are many sources of help for people with AIDS, and you can help the person with AIDS get what they are entitled to. 9. Think about joining a support group or talk to a counselor. Taking care of someone who is sick can be hard emotionally as well as physically. Talking about it with people with the same kind of worries helps sometimes. You can learn how other people cope and realize that you are not alone. 10. Take care of yourself. You cannot take care of someone else if you are sick or upset. Get the rest and exercise you need to keep going. You also need to do some things you enjoy, such as visiting your friends and relatives, going for worship and so on. Many AIDS service organizations can help with "despite care" and send someone to be with the person you're caring for while you get out of the house for a while. Helping patients feel comfortable at home Encourage the patients, to take care of themselves as much as they can for as long as they could. They need to be and feel as independent as possible. They need to control their own schedules, make their own decisions, and do what they want to do as much as they are able. They should develop their own exercise program and eating plan. In addition to regular visits to the doctor, let them stay healthy by eating properly, sleeping regularly, doing physical exercises, praying or meditating, or other things. If the person you are caring for finds something that helps them, encourage them to keep it up. An exercise program can help maintain weight and muscle tone and can make a person feel better if it is tailored to what the person can do. Well-balanced, good-tasting meals help people feel good, give them energy, and help their body fight illness. People with HIV infection are better off if they don't take alcoholic drinks, smoke, or use illegal drugs. Updating yourself on new treatments and understanding what to expect from treatments the person is taking are also important. There are some simple things you can do to help someone with AIDS feel comfortable at home. Respect their independence and privacy. Give them control as much as possible. Ask to enter their room, ask permission to sit with them, etc.; saying "Can I help you with that?" let them keep control. Ask them what you can do to make them comfortable. Many people feel shy about asking for help, especially help with things like using the toilet, bathing, shaving, eating, and dressing. Keep the home clean and looking bright and cheerful. Let the person with AIDS stay in a room that is near a bathroom. Leave tissues, towels, a trash basket, extra blankets, and other things the person might need close by so these things can be reached from the bed or chair. If the person you are caring for has to spend most of their time in bed, be sure to help them change position often. If possible, a person with AIDS should get out of bed as often as they can. A nurse can show you how to help someone move from bed to chair without hurting yourself or them. This helps prevent stiff joints, bedsores, and some kinds of pneumonia. They may also need your help to turn over or to adjust the pillows or blankets. Medication over the bed can help the patients shift position by themselves if they are strong enough. If they are so weak they 92 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives cannot turn over, have a health worker show you how to use a sheet to help roll the person in bed from side to side. Usually a person in bed needs to change position at least every 4 hours. Bedsores or other broken skin can be serious problems for someone with AIDS. In addition to changing position in bed often, to help keep skin healthy, put extra-soft material (sheepskin, "egg crate" foam, or water mattresses) under the person, keep the sheets dry and free from wrinkles, and massage the back and other parts of the body (like hips, elbows, and ankles) that press down on the bed. Report any red or broken areas on the skin to the doctor or nurse right away. Even in bed, a person can do simple arm, hand, leg, and foot exercises. These are usually called "range of motion" exercises. These exercises help prevent stiff, sore points and help keep the blood moving. A doctor, nurse, or physical therapist can show you how to help. If someone is having trouble breathing, sitting them up may help. Raise the head of a hospital-type bed or use extra pillows or some other soft back support. If they have severe trouble breathing, they need to see a doctor. A good back rub can help a person relax as well as help their circulation. A nurse, physical therapist, or book on massage can give you some tips on how to give a good back rub. Put books, remote controls, water, tissues, and a bell to call for help within easy reach. If the person can't get up, put a urinal or bedpan within easy reach. You are caring for a person, not just a body; their feelings are important too. Since every person is different, there are no rules about what to do or say, but here are some ideas that may help. Keep them involved in their care. Don't do everything for them or make all their decisions. Nobody likes feeling helpless. Have them help out around the house if they can. Everybody likes to feel useful. They want to be part of the group, contributing what they can. Include them in the household. Make them part of normal talk about books, TV shows, music, what is going on in the world, and so on. Many people will want to feel involved in the things that are happening around them. But you don't always have to talk; just being there is sometimes enough. Just watching TV together or sitting and reading in the same room is often comforting. Talk about things. Sometime they may need to talk about AIDS or talk through their own situation as a way to think out loud. Having AIDS can make a person angry, frustrated, depressed, scared, and lonely, just like any other serious illness. Listening, trying to understand, showing you care, and helping them work through their emotions is a big part of home care. A support group of other people with AIDS can also be a good place for them to talk things out. Contact any person who is a member of the Association of People with AIDS for information about support groups in your area. If they want professional counseling, help them get it. Invite their friends over to visit. A little socializing can be good for everyone. Touch them. Hug them, kiss them, pat them, and hold their hands to show that you care. Some people may not want physical closeness, but if they do, touch is a powerful way of saying you care. Get out together. If they are able, go to social events, shopping, riding around, walking around the block, or just into the park, yard, or porch to sit in the sun and breathe fresh air. Guarding Against Infections. People living with AIDS can get very sick from common germs and infections. Hugging, holding hands, giving massages, and many other types of 93 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives touching are safe for you, and needed by the person with AIDS. But you have to be careful not to spread germs that can hurt the person you are caring for. When providing care, you risk getting infected if you get stuck with a needle containing infected blood or splashed with infected blood in the eyes, nose, mouth, or on open cuts or sores. If you are taking care of a person with HIV infection, carefully follow the steps on how you can protect the infection. Washing your hands is the single best way to kill germs. Do it often! Wash your hands after you go to the bathroom and before you fix food. Wash your hands again before and after feeding them, bathing them, helping them go to the bathroom, or giving other care. Wash your hands if you sneeze or cough; touch your nose, mouth, or genitals; handle garbage or animal litter; or clean the house. If you touch anybody's blood, semen, urine, vaginal fluid, or faeces, wash your hands immediately. If you are caring for more than one person, wash your hands after helping one person and before helping the next person. Wash your hands with warm, soapy water for at least 15 seconds. Clean under your finger nails and between your fingers. If your hands get dry or sore, put on hand cream or lotion, but keep washing your hands frequently. If you have any cuts or sores, especially on your hands, you must take extra care not to infect the person with AIDS or yourself. If you have cold sores, fever blisters, or any other skin infection, don't touch the person or their things. You could pass your infection to them. If you have to give care, cover your sores with bandages, and wash your hands before touching the person. If the rash or sores are on your hands, wear disposable gloves. Do not use gloves more than one time; throw them away and get a new pair. If you have boils, impetigo, or shingles, if at all possible, stay away from the person with AIDS until you are well. If it‘s you or anybody else becomes sick, stay away from the person with AIDS until you're well. A person with AIDS often can't fight off colds, flu, or other common illnesses. If you are sick and nobody else can do what needs to be done for the person with AIDS, wear a well-fitting, surgical-type mask that covers your mouth and nose and wash your hands before coming near the person with AIDS. Chickenpox can be severe for people living with HIV (especially those with AIDS) and can even cause death. Chickenpox is caused by varicella zoster virus and spreads very easily. This virus also causes shingles. People with shingles can spread chickenpox to others who have never had chickenpox. If you are living with HIV and have never had chickenpox and you are not vaccinated, avoid contact with people deemed to be having chickenpox or shingles. People living with HIV who have already had chickenpox probably won't get this disease again. But, just to be on the safe side, here are some recommendations: Check with your healthcare provider to see if you have evidence of immunity to chickenpox and if you need the varicella (chickenpox) vaccine. Certain groups of people living with HIV can be vaccinated for protection against chickenpox. If you do not have evidence of immunity to chickenpox stay away from people with chickenpox or shingles, at least until all their blisters have completely crusted over Stay away from people who have never had chickenpox and are not vaccinated and who were recently exposed to someone with chickenpox or shingles. Avoid contact with the exposed person 8 to 21 days after they were exposed. This is the time period after exposure when someone is at risk of developing chickenpox rash. Also, it‘s possible for a 94 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives person exposed to chickenpox or shingles to be infectious 1-2 days before the rash develops. If you do not have evidence of immunity to chickenpox and you are exposed to someone with chickenpox or shingles, call your healthcare provider as soon as possible. There is a medicine that can make the disease less severe. The medicine must be given within 4 days after the person was exposed. Call the doctor as soon as possible if you develop symptoms of chickenpox or shingles. There is a medicine that can be given, but it must be given very soon after the person develops symptoms. If you are going to care for someone living with HIV who does not have evidence of immunity to chickenpox, check with your doctor to see if you have evidence of immunity to chickenpox and if you need the varicella (chickenpox) vaccine. If you have chickenpox or shingles, you should not care for someone living with HIV who does not have evidence of immunity to chickenpox until your blisters have completely crusted over. If you have been exposed to someone with chickenpox or shingles, ask a healthcare provider about protective measures you should take when caring for someone living with HIV infection and does not have evidence of immunity to chickenpox. These measures may include vaccination and/or avoiding contact with the person with HIV for 8-21 days after exposure. Protecting Yourself A person suffering from AIDS may sometimes have infections that can make you sick. You can protect yourself, however. Talk to the doctor or nurse to find out what germs can infect you and other people in the house. This is very important if you have HIV infection yourself. For example, diarrhoea can be caused by several different germs. Wear disposable gloves if you have to clean up after or help a person with diarrhoea and wash your hands carefully after you take the gloves off. Do not use disposable gloves more than one time. Another cause of diarrhoea is the cryptosporidiosis parasite. It is spread from the faeces of one person or animal to another person or animal, often by contaminated water, raw food, or food that is not cooked well enough. Again, wash your hands after using the bathroom and before fixing food. You can check with your local health department to see if cryptosporidiosis is in the water. If you hear that the water in your community may have cryptosporidiosis parasites, boil your drinking water for at least 1 minute to kill the parasite, and then let the water cool before drinking. You may want to buy bottled (distilled) water for cooking and drinking if the cryptosporidiosis parasite or other organisms that might make a person with HIV infection sick could be in the tap water. If the person with AIDS has a cough that lasts longer than a week, the doctor should check them for TB. If they do have TB, then you and everybody else living in the house should be checked for TB infection, even if you aren't coughing. If you are infected with TB germs, you can take medicine that will prevent you from developing TB.If the person with AIDS gets yellow jaundice (a sign of acute hepatitis) or has chronic hepatitis B infection, you and everybody else living in the house and any people the person with AIDS has had sex with should talk to their 95 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives doctor to see if anyone needs to take medicine to prevent hepatitis. All children should get hepatitis B vaccine whether or not they are around a person with AIDS. If the person with AIDS has fever blisters or cold sores (herpes simplex) around the mouth or nose, do not kiss or touch the sores. If you have to touch the sores to help the person, wear gloves and wash your hands carefully as soon as you take the gloves off. This is especially important if you have eczema (allergic skin) since the herpes simplex virus can cause severe skin disease in people with eczema. Throw the used gloves away; never use disposable gloves more than once. Many persons with or without AIDS are infected with a virus called cytomegalovirus (CMV), which can be spread in urine or saliva. Wash your hands after touching urine or saliva from a person with AIDS. This is especially important for someone who may be pregnant because a pregnant woman infected with CMV can also infect her unborn child. CMV causes birth defects such as deafness. Remember, to protect yourself and the person with AIDS from these diseases and others, be sure to wash your hands with soap and water before and after giving care, when handling food, after taking gloves off, and after going to the bathroom. Wearing gloves Because the virus that causes AIDS is in the blood of infected persons, blood or other body fluids (such as bloody faeces) that have blood in them could infect you. You can protect yourself by following some simple steps. Wear gloves if you have to touch semen, vaginal fluid, cuts or sores on the person with AIDS, or blood or body fluids that may have blood in them. Wear gloves to give care to the mouth, rectum, or genitals of the person with AIDS. Wear gloves to change diapers or sanitary pads or to empty bedpans or urinals. If you have any cuts, sores, rashes, or breaks in your skin, cover them with a bandage. If the cuts or sores are on your hands, use bandages and gloves. Wear gloves to clean up urine, faeces, or vomit to avoid all the germs, HIV and other kinds that might be there. There are two types of gloves you can use. Use disposable, hospital-type latex or vinyl gloves to take care of the person with AIDS if there is any blood you might touch. Use these gloves one time, and then throw them away. Do not use latex gloves more than one time even if they are marked "reusable." You can buy hospital-type gloves by the box at most drug stores, along with urinals, bedpans, and many other medical supplies. For cleaning blood or bloody fluids from floors, bed, etc., you can use household rubber gloves, which are sold at any drug or grocery store. These gloves can be cleaned and reused. Clean them with hot, soapy water and with a mixture of bleach and water (about 1/4 cup bleach to 1 gallon of water). Be sure not to use gloves that are peeling, cracked, or have holes in them. Don't use the rubber gloves to take care of a person with AIDS; they are too thick and bulky. To take gloves off, peel them down by turning them inside out. This will keep the wet side on the inside, away from your skin and other people. When you take the gloves off, wash your hands with soap and water right away. If there is a lot of blood, you can wear an apron or smock to keep your clothes from getting bloody. (If the person is bleeding a lot or very often, rush to the doctor or nurse immediately.) Clean up spilled blood as soon as you can. Put on gloves, wipe up the blood with paper towels or rags, put the used paper towels or rags in plastic bags to get rid of later, then wash the area where the blood was with a mix of bleach and water.Since HIV can be in semen, vaginal fluid, or breast milk just as it can be in blood, you should be as careful with these fluids as you are with blood. If you get blood, semen, vaginal fluid, breast milk, or other body fluid that might have blood in it in your eyes, nose, or mouth, immediately pour as much 96 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives water as possible over where you got splashed, then call the doctor, explain what happened, and ask what else you should do. Needles and Syringes A person with AIDS may need needles and syringes to take medicine for diseases caused by AIDS or for diabetes, hemophilia, or other illnesses. If you have to handle these needles and syringes, you must be careful not to stick yourself. That is one way you could get infected with HIV.Use a needle and syringe only one time. Do not put caps back on needles. Do not take needles off syringes. Do not break or bend needles. If a needle falls off a syringe, use something like tweezers or pliers to pick it up; do not use your fingers. Touch needles and syringes only by the barrel of the syringe. Hold the sharp end away from yourself. Put the used needle and syringe in a puncture-proof container. The doctor, nurse, or an AIDS service organization can give you a special container. If you don't have one, use a puncture-proof container with a plastic top, such as a coffee can. Keep a container in any room where needles and syringes are used. Put it well out of the reach of children or visitors, but in a place you can easily and quickly put the needle and syringe after they are used. When the container gets nearly full, seal it and get a new container. Ask the doctor or nurse how to get rid of the container with the used needles and syringes. If you get stuck with a needle used on the person with AIDS, don't panic. The chances are very good (better than 99%) that you will not be infected. However, you need to act quickly to get medical care. Put the needle in the used needle container, then wash where you stuck yourself as soon as you can, using warm, soapy water. Right after washing, call the doctor or the emergency room of a hospital, no matter what time it is, explain what happened, and ask what else you should do. Wastes Flush all liquid waste (urine, vomit, etc.) that has blood in it down the toilet. Be careful not to splash anything when you are pouring liquids into the toilet. Toilet paper and tissues with blood, semen, vaginal fluid, or breast milk may also be flushed down the toilet. Paper towels, sanitary pads and tampons, wound dressings and bandages, diapers, and other items with blood, semen, or vaginal fluid on them that cannot be flushed should be put in plastic bags. Put the items in the bag, then close and seal the bag. Ask the doctor, nurse, or local health department about how to get rid of things with blood, urine, vomit, semen, vaginal fluid, or breast milk on them. If you cannot have plastic bags handy, wrap the materials in enough newspaper to stop any leaks. Wear gloves when handling anything with blood, semen, vaginal fluids, or breast milk on it. Sexual intercourse If you used to or still do have sex with a person with HIV infection, and you didn't use latex condoms the right way every time you had sex, you could have HIV infection, too. You can talk to your doctor or a counsellor about taking an HIV antibody test. The idea of being tested for HIV may be scary. But, if you are infected, the sooner you find out and start getting medical care, the better off you will be. Talk to your sexual partner about what will need to change. It is very important that you protect yourself and your partner from transmitting HIV infection and other sexually transmitted diseases. Talk about types of sex that don't risk HIV infection. If you decide to have sexual intercourse (vaginal, anal, or oral), use condoms. Latex condoms can protect you from HIV infection if they are used the right way every time for sexual intercourse. 97 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Extra help you can provide Dealing with hospitals or insurance companies, filling out forms, and looking up records can be difficult even if you are well. Many people with AIDS need help with these tasks. Getting a ride to the doctor's office, clinic, drug store, or other places can be a problem. Don't wait to be asked, offer to help. Keeping a diary of medical events and other information for the person you are taking care of can help them and any other people who are helping. Be sure the person you are caring for knows what you are writing and helps keep the diary if they can. Keeping a record of medicine and other care for the doctor or the other people providing care can help a lot. Make sure you know what drugs the person is taking, how often they should take them, and what side effects to watch out for. The doctor, nurse, or pharmacist can tell you what to do. People who are sick sometimes forget to take medicine or take too much or too little. Divided pill boxes or a chart showing what medicines to take, when to take them, and how much of each to take can help. If the person you are caring for has to go into the hospital, you can still help. Take a special picture or other favorite things to the hospital. Tell the hospital staff of any special needs or habits the person has or if you see any problems. Most of all, visit often. Infants and children with HIV infection or AIDS need the same things as other children -- lots of love and affection. Small children need to be held, played with, kissed, hugged, fed, and rocked to sleep. As they grow, they need to play, have friends, and go to school, just like other kids. Kids with HIV are still kids, and need to be treated like any other kids in the family. Kids with AIDS need much of the same care that grown-ups with AIDS need, but there are a few extra things to look out for. Watch for any changes in health or the way the child acts. If you notice anything unusual for that child, let the doctor know. For a child with AIDS, little problems can become big problems very quickly. Watch for breathing problems, fever, unusual sleepiness, diarrhea, or changes in how much they eat. Talk to the child's doctor about what else to look for and when to report it. Talk to the doctor before the child gets any immunizations (including oral polio vaccine) or booster shots. Some vaccines could make the child sick. No child with HIV or anyone in the household should ever take oral polio vaccine. Stuffed and furry toys can hold dirt and might hide germs that can make the child sick. Plastic and washable toys are better. If the child has any stuffed toys, wash them in a washing machine often and keep them as clean as possible. Keep the child away from litter boxes and sandboxes that a pet or other animal might have been in. Ask the child's doctor what to do about pets that might be in the house. Try to keep the child from getting infectious diseases, especially chickenpox. If the child with HIV infection gets near somebody with chickenpox, tell the child's doctor right away. Chickenpox can kill a child with AIDS. Bandage any cuts or scrapes quickly and completely after washing with soap and warm water. Use gloves if the child is bleeding. Taking care of a child who is sick is very hard for people who love that child. You will need help and emotional support. You are not alone. There are people who can help you get through this. 98 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Changing symptoms Peoplewith AIDS seem to get very sick, then get better, then get very sick, then better, and so on. Sometimes they get sicker and sicker. You cannot always tell if they are going to live through a particular illness or not. Such times are very rough on everyone involved. If you know what to expect, you can deal with these rough times better. Dementia (having trouble thinking) can be a problem for a person with AIDS.AIDS can affect the brain and cause poor memory; short attention span; trouble moving, speaking, or thinking; less alertness; loss of interest in things; and wide mood swings. These problems can upset the person with AIDS as well as the people around them. Mental problems can make it hard to follow the planned routines for care and make it difficult to protect the person with AIDS from infections. Be prepared to recognize these problems, understand what is happening, and talk to the doctor, nurse, social worker, or mental health worker about what to do. If the person you are caring for does developmental problems: Keep important things in the same place all the time, a place that is easy to reach and easy to see. If you need to, remind the person you are caring for where they are and who you are. Put a clock and a calendar where the person you are caring for can see them. Mark off the days on the calendar. Write in what will happen each day. Put up pictures of people who might be in the house with their names on the pictures where the person with AIDS can see them. Speak in short, simple sentences. Don't be afraid to be firm. Remove things like dangerous objects from reach. Keep the sound from TVs, radios, and other noises down so the person doesn't get confused by unexpected sounds. Talk to a health care worker who deals with people with dementia about how to handle problems. As AIDS Progresses Here are some of the things to expect as AIDS enters its final stages and ways to try to cope. Like other people nearing death, a person with AIDS is also near death: Sleeps more and more and is hard to wake up. Try to talk to them and do things during those times when they do seem alert. Becomes confused about where they are, the time or date, or who people are. Tell them where they are, what time and day it is, and who people are. Don't scold them for forgetting, just tell them. Begins to wet their pants or lose bowel control. Clean them, using gloves, and use powder or lotion to prevent rashes. A catheter for passing urine may become necessary. Has skin that feels cool to the touch and may turn darker on the side of their body touching the bed as the circulation slows down. Keep them covered with warm blankets, but do not use electric blankets because they can burn a person with poor circulation. May have trouble seeing or hearing. Even so, never talk to other people as if the person with AIDS cannot hear you. Always talk to the person with AIDS or anyone else in the room as if the person with AIDS hears you. May seem restless, pulling at the sheets on the bed or acting as if they see things that you 99 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives do not. Stay calm, speak slowly, and reassure the person. Comfort them with gentle reminders about who you are and where they are. May stop eating and drinking. Wipe their mouth often with a wet cloth. Keep their lips wet with lip moisturizer. May almost stop urinating. If there is a catheter, it may need to be rinsed or flushed to keep it from getting blocked. A nurse can show you how to do this. Has noisy breathing because they can't cough up the fluids that collect in the back of their throat. Talk to their doctor; the doctor may suggest raising the head of the bed or putting extra pillows under their head. Turning them on their side may also help. If they can swallow, feed them some ice chips. If they have trouble swallowing, a cool, wet washcloth on the lips can keep their mouth and lips moist and may satisfy their thirst. If they begin to have irregular breathing or seem to stop breathing for a minute, call the doctor. Hospice Care Many people find hospice care (programs for people who are dying and their caregivers) for adults and children a big help. Others feel that hospice care is not right for them. Hospice services help caregivers, family, and other loved ones, as well as help the dying person deal with the concerns and fears that may come near the end of their life. You should be able to find hospice centres for help. Final Arrangements A person with AIDS, like every other adult, should have a will. This can be a difficult subject to discuss, but a will may need to be written before there is any question of the mental competence of the person with AIDS. You may want to be sure the person you are caring for has a will and that you know where it is. Living wills, which specify what medical care the person with AIDS wants or does not want, also have to be written before their mental competence could be questioned. You, as the caregiver, may be the person asked to see that the doctors follow the wishes of the person with AIDS. This can be a very hard experience to deal with, but is another way of showing respect for a dying person. You may want to be sure the person you are caring for knows that they can control their medical care through living wills. Often, people who know that they will die soon choose to make their own funeral or memorial arrangements. This helps make sure that the funeral will be done the way they want it done. It also makes things easier for those left behind. They no longer have to guess what their friend or loved one would have wanted. You may be asked to help the person with AIDS plan the funeral, make arrangements with the funeral home, and select a cemetery plot or mausoleum. You may be able to help the person with AIDS decide how they wish to be buried or if they want to be cremated. After death, there will still be things to do. Programs that have been providing help, such as clinical follow-ups, will have to be officially informed of the death. Some money already sent or received may have to be returned. The will may name you, a relative, or another person as the one to handle these tasks. 100 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Dying at Home Whether or not to die at home is a big decision, but it may not have to be made right away. As the health of the person with AIDS changes, you and they may change your minds several times. However, it is something you should talk about with the person with AIDS ahead of time. Plans should be made; legal papers may need to be signed. What the dying person wants and needs, the needs and abilities of the caregivers and other loved ones, the advice of the doctors and other medical professionals, the advice of clergy or other spiritual leaders, may all need to be considered in deciding what is best. Consideration must be given to everyone living in the home. Small children and others may not be ready to cope with death in their home. Others in the home may prefer to face the final moments of the person with AIDS in familiar surroundings. Just be sure the person with AIDS knows that they will not die alone, that the people they love will try to be with them, wherever they choose to die. You also should get help to deal with your own grief after the death. Extra help for You Taking care of someone who is very sick is hard. It wears you down physically and emotionally and creates stress. You can get very angry watching a person you love get sicker and sicker no matter how hard you work or how much you care. You have to do something with this anger. Many people can talk out their anger with other people who have the same problems or with counsellors, ministers, rabbis, friends, family, or health workers.Many AIDS service organizations can help you find people to talk to. Do not try to be the only person taking care of someone with AIDS. You need some time for yourself. The sicker the person you are taking care of becomes, the more important this is. If you try to do everything lonely, you will wear yourself out and not be able to go on. You are not alone. Other people have done this before. Learn from them. AIDS, STIGMA & DISCRIMINATION AIDS-related stigma and discrimination refers to prejudice, negative attitudes, abuse and maltreatment directed at people living with HIV and AIDS. The consequences of stigma and discrimination are wide-ranging: being shunned by family, peers and the wider community, poor treatment in healthcare and education settings, an erosion of rights, psychological damage, and a negative effect on the success of HIV testing and treatment. People with HIV enjoy full lives and there are very few things that you cannot do just because you have HIV. Crucially, most people with HIV find that they are loved, accepted and supported by those close to them. But we do not live in a perfect world. People with HIV do still come across stigma, prejudice and discrimination. This can often be the worst part of living with HIV. It is worth knowing that stigma and discrimination are taken seriously by the organisations that work for the rights and wellbeing of people with HIV. To deal with stigma and discrimination, it can be helpful to understand what causes them, to work out ways of responding to them, and to find out where you can go for help and support. 101 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives What is stigma? Stigma means different things to different people: “Theshameordisgraceattachedtosomethingregardedassociallyunacceptable.” There may be a feeling of ‗us and them‘. People who are stigmatised are marked out as being different and are blamed for that difference. HIV is an infection which many people have fears, prejudices or negative attitudes about. Stigma can result in people with HIV being insulted, rejected, gossiped about and excluded from social activities. Fear of this happening can lead to people with HIV being nervous about telling others that they have HIV or avoiding contact with other people. They may end up suffering silently instead of getting the help they need. Stigma can also result in people with HIV believing the things that other people say about HIV. For example, they may think it‘s true that HIV is a death sentence or that most people with HIV are immoral or irresponsible. Stigma is often attached to things people are afraid of. Ever since the advent of AIDS in the early 1980s, people with HIV are relentlessly stigmatised. There are a number of reasons for this: HIV is a serious, life-threatening illness. There is a long history of illnesses being stigmatised– cancer and tuberculosis are two other examples. People who do not understand how HIV is transmitted may be afraid of ‗catching‘ it through social contact. Some people have strong views about sexual behaviour. They may think that there are situations in which sex is wrong or that certain people should not behave in particular ways. The way people think about HIV depends on the way they think about the social groups that are most affected by HIV. Some people already have negative feelings about women, gay men, immigrants, black people, drug users and others. Stigma leads to people not being treated with dignity and respect. Discrimination While stigma is sometimes hard to pin down (it may be found in people‘s attitudes or beliefs), discrimination is a little easier to describe. It‘s about actual behaviour. Discrimination means treating one person differently from another in a way that is unfair – for example, treating one person less favourably simply because he or she has HIV. Here are some examples of things which would normally lead to discrimination: A dental surgery that refuses to register people with HIV as patients. A company which pays a lower salary to employees with HIV. A mandatory HIV test before getting a visa to a specific country. All people with HIV need to be treated fairly, in the same way as people who are discriminated against because of their race, sex, age, sexual orientation or religion. For the purposes of these perceptions, people with diagnosed HIV are defined as having a ‗disability‘. Some people with HIV do not feel disabled and prefer not to be described in this way. Myths and facts When thinking about stigma and discrimination, a good place to start might be to consider how irrational and wrong they are. Stigma and discrimination are usually based on ignorance and prejudice. There are some common misconceptions about HIV, and it is worth reminding that these views are factually incorrect. In fact, HIV is difficult to catch. It cannot be picked up 102 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives during day-to-day contact and good hygiene practices are enough to protect healthcare workers. You can prevent passing on HIV to sexual partners by using condoms. Mother-to-child transmission of HIV can be prevented in nearly all cases with the right treatment and care. HIV is not fatal apart from AIDS and it takes a number of steps for one infected with HIV to develop AIDS. And HIV/AIDS treatment is highly effective. Most people who receive HIV treatment at the right time, take it as prescribed, and look after their health always live longer. Having AIDS is no longer a death sentence as it used to be. HIV treatment is highly costeffective and enables people to live full and productive lives. Without treatment, people with HIV eventually become extremely ill. They then need medical care that is much more expensive than HIV drugs.Being diagnosed with HIV may change your life. Some people with HIV experience health problems, loneliness, exclusion, poverty or unhappiness. All too often, such experiences are related to the discrimination that people with HIV experience from others, the fear of being rejected, or because they blame themselves for the situation they are in. But in time, many HIV-positive people maintain and form new close relationships, have the support of their families, have children without putting others at risk of infection, have fulfilling love and sex lives, maintain and develop careers, and make plans for the future. Stigma is one of the reasons that some people end up having quite negative feelings about themselves and about having HIV. In society, a lot of negative and inaccurate ideas are spread about HIV. It can be difficult for anybody, including people with HIV, to ignore all these ideas and not be influenced by them. Before you found out that you have HIV, perhaps you looked upon people with HIV in a rather negative way yourself. Or perhaps HIV was not a topic that you had thought too much about. But without realising it, you may have taken on board some of those inaccurate ideas. When you find out that you have HIV, it can be difficult to shake these ideas off. For example, some people with HIV believe that they deserved to get it, that they are not worth looking after, or that having HIV is a death sentence. If you feel this way, it‘s important to question and challenge these thoughts and feelings. HIV support organisations can help you do this. If you think carefully about all the things you have ever heard about HIV and then compare that with what you know about your own life, you may find that a lot of what you have heard was just plain wrong. Some people find it useful to meet other people with HIV and to hear their experiences. This may give you a better idea of how people live with HIV and what it means to them. Connecting with others You do not need to deal with problems on your own. Talking to someone close to you about how you feel about HIV and its effect on your life can really help. But if you do not feel able or ready to tell friends, family or loved ones that you have HIV or about your feelings, there is support available from organisations which can help. Even if your family and friends are supportive, you may find it helpful to meet other people who are living with HIV. It may be good to talk to someone who is going through similar things to you or has been through them before. Many HIV organisations host groups for people with HIV to meet, talk, and provide mutual support. Some people find it helpful to dip into a group when they are feeling under pressure or dealing with a particular problem. Others use them as a source of long-term support and feel they are part of a positive community. Some groups are open to all people with HIV, while others are only open to people from certain communities. Some organisations also offer courses for people who have recently found out they have HIV or for people who want to learn more about living well with HIV. These are also good opportunities to meet other people with HIV. ―When you are 103 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives being told of your status, you go through those stages of feeling anger, you blame yourself, and you feel ashamed. But as you go along to these meetings, meeting people with the same condition, you build up your confidence.” Not everybody finds these courses and groups useful, so do not think that there‘s something wrong with you if you try one and it does not suit you. There is nothing to stop you trying another one, or coming back at some stage in the future. Support groups have strict rules about confidentiality, so you should not have to worry about people finding out that you are going to one. On the internet, you can also get support and information from HIV-positive people. There are some specialist websites which have discussion forums and which aim to create an online community. There are other websites which will put you in touch with other people with HIV, either for dating or for friendship. While most of the people you contact through these websites will be genuine, it is advisable to take care when exchanging personal information or arranging to meet in person. ―Everybody can keep on telling you to „think positive.‟ Being HIV-positive is not something to be positive about and you shouldsaythat – it is what you feel. You have managed to live a full life with HIV, but to do this it was important to acknowledge what having HIV meant to you.” Dealing with stigma and discrimination Experiencing stigma and discrimination can be very painful. Try not to bottle up your feelings about these experiences. First of all, do not blame yourself. Remind yourself that stigma and discrimination are wrong. If you can, talk to somebody close to you that you trust, or make contact with an HIV support organisation so that you can safely talk through your experiences and feelings. If it feels safe, and you have the confidence to do so, it may be worth speaking to the person who has said or done something that you think is stigmatising or discriminatory. ―If I am upset, the only way I can get relief is telling someone that is very close to me. It is best to stay calm and open-minded when doing this. It is possible that the person did not mean any offence or that you have misinterpreted their words or actions. If you fear stigma or discrimination, it is sometimes possible to misinterpret quite innocent episodes. You could ask the person why they said or did the thing that has upset you. You could then calmly explain your point of view. This gives the person an opportunity to put things right. But if the person‘s response is not satisfactory, you may want to take things further. For example, if he or she works for a business or an organisation, you could speak to someone more senior. There are often more formal ways of challenging discrimination. This may involve using complaints procedures or the law. Going through these processes can be emotionally draining and time-consuming, with no guarantee of a satisfactory result. Discrimination against people with HIV is taken seriously by the government, its agencies and organisations that work for people with HIV. Everybody with HIV needs to go to a specialist clinic to get the best possible treatment and care. It is also important to have a GP and from time to time you will probably have to see other health specialists. Sometimes people with HIV experience difficulties with healthcare workers. But there are similar rules and codes of ethics in all healthcare services, so you ought to be treated with respect whether you are at the HIV clinic, other hospital service, GP or dentist. Professionals work to codes of ethics to make sure that their personal prejudices do not interfere in the kind of treatment they offer to patients. There are strict rules about the confidentiality of medical information and medical records. Although it is normal for healthcare workers to have access to your medical records, professionally this information is not shared with others or otherwise. 104 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Some medical procedures involve contact with blood and other body fluids. To avoid infection or onward transmission, healthcare workers should follow ‗universal‘ infection control procedures. No extra precautions are required when the healthcare workers know that their patient has HIV. Unfortunately there are occasions when healthcare workers don‘t live up to the standards that we expect. Sometimes it‘s a simple mistake or oversight, or ignorance, but sadly it can be because a healthcare worker is prejudiced. If you have tried discussing the problem with the healthcare worker concerned or with a manager and have not had a satisfactory response, then you may want to deal with the matter in a more formal way. In most areas, a hospice has a Patient Advice and Liaison Service Officer who should help you to sort out the problem or, if necessary, make a complaint. You could also tell an HIV organisation about what you have experienced –they may be able to help you make a complaint and offer practical and emotional support. ―Some staff lack adequate knowledge and when it comes to handling HIV it is a mess. They think just by touching your body they can get it. The standard of care you receive should not be affected because you are making a complaint. You do not have to tell your employer you have HIV. Having confidential medical information is part of your right to privacy. The only situation you may need to reveal your status is on the application for Family and Medical Leave, which must remain in a private file to which only the director of human resources or you have access. If it is shared with anyone else and discrimination results, the employee could sue the employer. Before disclosing to an employer for benefits purposes, contact a benefits counselor or legal advocate before disclosing. Most people with HIV will never experience any problems at work because they have HIV. But stigma and discrimination can occur in the forms of breaches of confidentiality, gossip, being left out of activities, or even losing your job after your employer finds out you have HIV. You are entitled to recruitment, terms and conditions of employment, the way you are treated at work, and opportunities for job development and promotion. People with diagnosed HIV have a disability and cannot be discriminated against because of their health status. But there are two important exceptions. Healthcare workers with HIV can be excluded from jobs such as surgery and dentistry. Also, people with HIV can be excluded from the armed forces. When applying for a job, you may be asked to complete an equal opportunities monitoring form which asks if you have a disability. The form should be handled separately from your job application and treated in confidence. Nonetheless, you are not obliged to complete this form or answer this question. In most cases, the employer is not permitted to ask more detailed questions about your health before making a job offer. If an employer asks your doctor for a medical report, you need to give permission before a report is sent. Your employer is also legally obliged to protect the confidentiality of private information that it holds about you. Most people find that having HIV does not make any difference to their ability to do their job at all. But if having HIV does make doing the job more difficult, then you can ask for what‘s called a ‗reasonable adjustment‘. Unfortunately, some personal finance products are not available to people who know they have HIV. This includes most life insurance policies, private medical insurance, critical illness cover and income protection. Insurance application forms should be filled in honestly and accurately – if they are not, the policy will not be valid and the company may refuse to pay out if a claim is made. On the other hand, if you took out a policy before you found out that you have HIV, it may continue to be valid. You need to check the small print of the policy, in particular the list of ‗exclusions‘. If an insurance company asks your doctor for a medical report, you need to give permission before a 105 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives report is sent. In terms of travel insurance, policies often exclude cover for pre-existing medical conditions, including HIV. Nonetheless, it may be worth taking out cover just in case you have an illness that is unrelated to HIV, have an accident, lose your luggage or have something stolen. In addition, some specialist companies do provide cover for people with pre-existing medical conditions, including HIV. Having HIV should not prevent you from getting a mortgage or a pension. It is unjust to discriminate against people with HIV in the provision of goods and services, such as when finding housing or when using shops, restaurants and hotels. This means, for example, that a business cannot refuse your custom or treat you less favourably because you have HIV. Similarly, a landlord cannot refuse to let a property to you because you have HIV. This sort of harassment is illegal, whatever its motive. In addition, if you are harassed or attacked because you have HIV (or because of your race or sexuality), this is classed as a crime and authorities can handle it immediately if reported. HIV sometimes gets good coverage in the media. At other times the media uses clichés, is inaccurate and expresses prejudice. It can be annoying to find HIV described as a ‗death sentence‘ or to see people with HIV being represented as irresponsible. One way of coping with stigma in the media is to ignore it. If you know that an article in a newspaper or a programme on the TV or radio is going to upset you or make you angry, then you do not need to read, watch or listen to it. Try and develop a strategy for dealing with inaccurate or stigmatising media items. For example, tell yourself how poor it is that a journalist is so bad at their job that they cannot get basic facts right. Or try reminding yourself that the stigma or prejudice that an item reflects is simply wrong. You might want to write a letter of comment or complaint, pointing out the item‘s faults and inaccuracies. News-based websites usually have a response page where you can point out errors and inaccuracies. Any reputable TV or radio station will have a department to respond to viewers‘ and listeners‘ comments and complaints, and newspapers and magazines have a separate page for letters. So if you do not feel confident complaining to the media yourself. One of the biggest stigmatising things is the way the media presents those criminalisation cases. That the whole issue is turned into innocent victim horror, you know a horrid evil character that is going out and doing it. In engaging with the media to try and make sure that HIV is accurately reported and that inaccuracies are challenged. Should you become the focus of media attention, think very carefully before speaking to a journalist and consider asking an HIV agency with experience of media work for support. There are a lot of agencies to turn to if you feel stigmatised or have experienced discrimination. There are also organisations which can help make your voice heard or who lead campaigns against unfair treatment of people living with HIV. Try one if necessary. Making a complaint Before you lodge a complaint, it is worth thinking about what you would like to happen as a result of your complaint. Perhaps you want an apology, an explanation or a decision to be changed. On the other hand you might want to be sure that the same thing should not happen to anyone else again. It is helpful to keep detailed notes about the incident you wish to complain about. Do not be abusive or threatening – try to remain calm. Official complaint procedures can be lengthy and can be emotionally demanding. When making a complaint, it is important to contact the right agent. 106 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives DRUG INTERACTIONS In order for a drug to work properly, a person must take the correct dose so that the right amount of drug enters the bloodstream. Before an HIV drug is approved, researchers study different doses and choose one that is both safe and effective. The dose has to be high enough to stop HIV from making copies of itself, but not so high that it causes a lot of side effects. All people living with HIV who are on treatment take more than one HIV drug, even if they only take one pill. Some pills contain more than one drug. Many HIV positive people take other types of medications as well. Some prescription, over-the-counter, and recreational drugs, as well as herbs, vitamins, and supplements, can cause changes in the amount of HIV drugs in your bloodstream, even if you take the correct doses. Eating certain foods and beverages can also change drug levels in the blood. When one drug affects the level of another drug it is called an interaction. Some drug interactions do not cause problems, but some interactions can be harmful. It is important to discuss the possibility of drug interactions with your health care provider when choosing a new HIV drug combination or when adding or removing any drug from your regimen. Drug Metabolism The body metabolizes (breaks down) the drugs you take. This process involves the liver and kidneys: Proteins in the liver called enzymes break down the drug The kidneys filter the drug out of the bloodstream and into the urine The drug is removed from the body in urine or faeces Sometimes, one drug affects the way another drug is metabolized by speeding up or slowing down the action of liver enzymes. This can cause big changes in the blood levels of other drugs that are broken down by the same enzyme. Drugs That Slow Down Metabolism Some drugs inhibit (slow down) the liver enzymes. This causes other drugs to be metabolized and eliminated from the system more slowly, which: Increases the amount of other drugs in the body Increases the length of time other drugs stay in the bloodstream This can be useful in HIV therapy. Unfortunately, increased blood levels of drugs can also cause overdoses or increase side effects. If you are taking a drug that slows down liver enzymes, your health care provider may need to adjust the doses of your other medications. Drugs That Speed Up Metabolism Some drugs induce (speed up) the action of the liver enzymes. This causes other drugs to be metabolized and flushed out of the system more rapidly, which: Decreases the amount of other drugs in the body May cause other drugs to be less effective 107 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Some drugs used to treat HIV-related conditions speed up liver enzymes. This can be a serious problem if it causes the HIV drugs to be metabolized too quickly. If HIV drug levels drop too low: HIV can make more copies of itself Viral load can go up Resistance can develop HIV drugs can stop working Some drugs speed up enzymes and get some other drugs out of the system more quickly. If you are taking a drug that speeds up liver enzymes, your health care provider may need to increase the doses of your other medications. Drugs and Other Substances that May Interact with HIV Medications There is a long list of prescription, over-the-counter, complementary, and recreational drugs that may have significant interactions with HIV medications. Food and beverages can also change the way HIV drugs are broken down in the body. Below are a few examples: Birth Control Pills Some birth control pills containing can interact with HIV drugs. This can make the pills less effective and increase the chances of pregnancy. If your HIV drugs affect the levels of your birth control pills, talk with your provider about switching to or adding another form of birth control. Complementary Therapies Many HIV+ people use complementary therapies such as vitamins or herbs. It is important to tell your health care provider if you take any vitamins, herbs, or supplements. Recreational Drugs and Alcohol Interactions between ecstasy or amphetamines (crystal meth, speed) and PIs are particularly dangerous. Alcohol affects body processes and is often responsible for drug interactions. Combining alcohol and certain HIV drugs can put you at risk for developing pancreatitis (inflammation of the pancreas). Methadone Methadone can interact with many HIV drugs. It is important to tell the health care provider what you are taking. This way necessary adjustment can be made to insure you get enough methadone to prevent withdrawal symptoms and enough HIV drugs to fight the virus effectively. Other Types of Drugs That May Interact with HIV Drugs There are certain classes of drugs to treat different medical conditions that are more likely to interact with HIV drugs. Not all drugs in these classes cause problems. If you take any of the following types of drugs, talk to your health care provider about the specific drugs you take and if there are any possible interactions. Note: this is not a complete list; other classes of drugs may also cause interactions. Antifungal drugs Antibiotics Antacids Drugs that prevent convulsions or seizures 108 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Drugs to treat depression Antihistamines (allergy medications) Drugs to control heart rhythm Opium-based pain killers Drugs that increase bowel activity Sedatives (medications to calm your nerves) Drugs to thin the blood Drugs to treat erectile dysfunction Drugs to treat tuberculosis Food and medication Any pills that you take go through your stomach. What you eat can affect how much of your drugs get into your system. Most drugs are absorbed faster if your stomach is empty. For some drugs, this is a good thing, but it can also cause more side effects. Some drugs need to be taken with food so that they are broken down more slowly, or to reduce their side effects. Others should be taken with fatty foods because they dissolve in fat and are absorbed better. Check your drug labels and follow the food instructions carefully. If you have any questions, it is important to ask your provider or pharmacist. HIV+ people often have to take many different drugs. Sometimes taking more than one medication can cause drug interactions. This can lead to the drugs not working as well or an increased risk of side effects. Because there are so many possible drug interactions with the HIV drugs, it is very important for you and your health care provider to go over all your medications (including over-the-counter, prescription, street drugs, and complimentary therapies), even if you only use them occasionally. Your health care provider may need to adjust the doses of your drugs to avoid under- or overdosing or change the drugs you currently take. To get the best results, it is a good idea to: Keep a list of all your drugs and ask your health care provider to review it for possible interactions Give a copy of your drug list to all of your health care providers Discuss all your medical conditions with your health care provider Each time you are prescribed a new medication, check with your health care provider to see if it can be combined safely with your other therapies Review the information that comes with each medication ask for this information for each drug that you are taking Have all your prescriptions filled at one pharmacy Learn about all the possible side effects of your drugs Learn how, when, and with what to take your drugs Do not stop or change your drugs without talking to your health care provider Report any side effects to your provider 109 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives DRUG RESISTANCE The outlook for people with HIV has never been better. The right treatment and care can mean that you have a good chance of living a long and healthy life, with a near-normal lifespan. Drug resistance is a major problem in HIV infections. If patients do not adhere perfectly to their drug regimen, the virus rapidly eliminates its vulnerability. Once it has evaded one drug combination, others are less likely to work as well.However, treatment with a combination of these drugs can reduce the amount of HIV in your blood (your viral load) to such a low level that it cannot be detected using laboratory tests. This is called an ‗undetectable‘ level. An undetectable viral load is the aim of HIV treatment. Having an undetectable viral load means that your immune system is still strong and fighting off infections. Not taking your HIV treatment properly can mean that the levels of the drugs in your blood are not high enough to properly fight HIV. If this happens, HIV will be able to replicate. The strains of HIV that reproduce when you are taking HIV treatment can develop resistance to the drugs you are taking. Resistance can mean that your HIV treatment won‘t work properly. Your treatment not working is likely to mean that your viral load will increase and your CD4 cell count, an important indicator of the health of your immune system, will fall. This situation increases your chances of becoming ill because of HIV and eventual death. If your viral load increases to detectable levels, then you will need to change your HIV treatment. You may also become resistant to drugs similar to those you are currently taking. This is called cross-resistance and the risk varies between different classes of HIV drugs. When taken properly, HIV treatment can also lower viral load in genital fluids to undetectable levels. This can reduce the risk of HIV transmission during sex. A consequence of not taking your HIV treatment properly can be that the amount of virus in your genital fluids increases, therefore increasing the risk of passing on HIV to your sexual partner(s) and the type of HIV which you pass on may be resistant to one or more of the drugs. Taking your drugs properly is often called adherence. Adherence to your HIV treatment means: Taking all the medicines that make up your HIV treatment combination in the right quantities. Taking your medicines at the right time. Taking your medication too late can be as bad as not taking it at all. 110 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Following any instructions about food. Some medicines need to be taken with food so they are absorbed properly, but others need to be taken on an empty stomach. It is also important to know that some herbal and alternative medicines can interact with some anti-HIV drugs, as can some recreational and illegal drugs. The best results of HIV treatment are seen in people who take all or nearly all of the doses of their drugs in the right way. Modern HIV treatment has a very powerful anti-HIV effect, but nevertheless taking fewer than 95% of your doses correctly is associated with an increase in viral load, a fall in CD4 cell count, and an increased risk of resistance. A wide range of factors can have an influence on how well you adhere to your HIV treatment. These differ between people and can change over time. This means that there‘s no single magic solution that can guarantee the best possible adherence for everyone. Instead, it‘s important to think about the factors that are likely to affect you. If you miss a dose, you should try and make an effort to take every dose of your medication at the right time and in the right way. But most people taking HIV treatment occasionally forget to take a dose of their treatment. What you should do about missed doses will depend on circumstances. You should still take the dose if you remember within a few hours. But do not take your medicine if it would mean taking the dose very late. It is a good idea to discuss this with your doctor or pharmacist; as how late you can take a dose will vary, depending on the drugs you are taking. You should not take a double dose to compensate for the one you have missed. It is important to remember that taking doses late can be as bad as not taking them at all. If you are regularly missing doses of your medication, or taking them late, it‘s a good idea to mention this to your doctor. A reliable clinic should be able to offer advice and support to you. If you are involved in decisions about starting or changing your HIV treatment, and feel comfortable about what you have decided, then you will be more likely to take your treatment properly. Your doctor should take time to talk with you why you need to start or change HIV treatment. You should also be given written information to take away and read about any treatment you are considering.Other members of the healthcare team at your clinic, particularly HIV pharmacists, health advisers or health trainers, and nurses are also good sources of information and support when starting or changing treatment. You can get help from a health trainer through HIV Health Support Services. Health workers work in HIV clinics, community centres or can pay a visit in your home and provide information, advice and support about living with HIV, treatment and managing your condition. You can ask for a health worker at your clinic, or community.It is a good idea to ask questions if you are unclear about anything and to keep on asking questions until you understand. You will probably have an opportunity to think about starting treatment over a number of weeks or even months. There‘s a good chance that your adherence will be better if you start taking treatment when you are ready to do so. It‘s important to know, however, that you are likely to be advised to start taking HIV treatment soon if you are ill because of HIV. HIV treatment is also recommended for people even if they have no symptoms when their CD4 cell count falls to lower levels. If you need to change treatment because your current HIV treatment is not controlling your viral load, it is important that you do this as soon as possible to reduce the risk of resistance.Often people who understand the benefits of HIV treatment take their treatment properly. It is good to know that the amount of illness and death caused by HIV falls dramatically with effective treatment. If you take your treatment properly, you will live a near-normal lifespan. If you have questions or concerns about the effectiveness of HIV treatment or its possible sideeffects, it makes sense to discuss these with your HIV doctor or another member of your 111 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives healthcare team. Mental health problems such as depression may be as a result of not taking HIV treatment properly. Depression is quite common in people with HIV. However, it can be successfully treated and a lot of support is available through your clinic as well as through HIV organisations if you have emotional or mental health problems. Therefore it is a good idea to tell your HIV doctor if you think you are depressed, particularly if this means that you are having problems taking your treatment. Feeling isolated or alone, or having worries about money, housing, immigration or employment, can all make it harder to take your HIV treatment properly. These concerns may seem more pressing and important than prioritising or taking your treatment. HIV organisations can be a good place to turn to for support if you are facing any of these issues. Your HIV clinic may have a specialist social worker who can help, so it‘s a good idea to tell your doctor about any problem you have. If you are starting HIV treatment for the first time, then it‘s likely that you will be able to choose from a number of once-daily combinations. There is even an HIV treatment that consists of just one pill, once a day. Even if you have taken a lot of HIV drugs in the past, it‘s very unlikely that you will have to take your treatment more than twice daily. If you have a preference for once- or twice-daily treatment you should discuss this with your doctor. Some people have difficulty taking large numbers of pills. However, HIV treatment for most people consists of a few pills once or twice a day. If you have a choice, choosing the simplest combination with the fewest pills is likely to boost your chance of taking your treatment properly. Some HIV drugs need to be taken with food to work properly, whereas others should be taken on an empty stomach. However, for some drugs, it does not matter if they are taken with or without food. Some people find it difficult to take their HIV treatment on an empty stomach because this means not eating for a certain amount of time before or after taking their medicines. Other people prefer not to take their anti-HIV drugs with food because this can reduce the amount of flexibility they have about the time they take their treatment. If you have a preference or concerns about food restrictions it makes good sense to let your doctor know this so that you can be prescribed the most appropriate treatment. Some HIV clinics have dieticians who can make sure you are eating enough food for your medication to be absorbed properly. Like all medication, HIV treatment can cause side-effects, and these can be a reason why people don‘t take their treatment properly. The risk of side-effects can vary between individual drugs. It is not inevitable that your HIV treatment will cause side-effects, and the medicines used may generally only cause mild side-effects that either become more tolerable or go away completely with time. However, side-effects do happen. If you are concerned about the risk of developing a particular side-effect, then mention this to your HIV doctor. You will then be able to discuss your concerns, and it may be possible to choose a treatment that doesn‘t cause the side-effect you are worried about. It also makes good sense to speak to your doctor about any side-effects that you develop after starting treatment. It‘s nearly always possible to do something about side-effects. Do not miss doses of your treatment in an attempt to avoid side-effects. If you develop a sideeffect, you shouldn‘t stop taking your HIV treatment without speaking to your doctor first. Dieticians can give advice on how to minimise side-effects like nausea and diarrhoea. To reduce the risk of potentially harmful interactions between drugs, it makes good sense to tell your HIV doctor or pharmacist about any other medicines, supplements or drugs you are taking. This includes medicines prescribed by another healthcare professional, as well as medicines bought over the counter, some nutritional supplements, herbal and alternative drugs, and illegal and recreational drugs. Sometimes people feel uncomfortable telling their healthcare team about 112 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives drug use. Your HIV doctor is more likely to be concerned about avoiding potentially dangerous interactions than telling you off about the use of recreational drugs. It‘s also good to know that support and information will be available from your clinic if you are concerned about your drug use. Simple forgetfulness is a common reason for missing doses of anti-HIV drugs. If you do forget to take your medication do not be too hard on yourself, but do try to learn from the experience about what it was that caused you to forget. If you are missing doses regularly, then discuss this with your doctor. It may be possible to make your schedule easier, or to change to a more suitable combination. Where this is not an option, talking through your concerns with your healthcare team may provide you with the support you need to manage your treatment better. Practicing to take doses of sweets or multivitamins for a few weeks in the same quantities, and at the same time, as you will have to take your anti-HIV drugs regimen and taking account of any dietary or other restrictions, helps to adhere to the actual regimen when you start it. Confusion over which pills to take when, and what times to eat or avoid food, may be a problem when starting a new combination. To avoid this, your doctor or pharmacist can provide a written daily schedule with your prescription, which you can tick off after taking your dose. Some pharmacists offer stickers for medication containers, which have the same function. Partitioned containers that you fill once a week or every few days with the individual daily doses are available. With some versions you can take out a single day's dose or several if you may be away for some time. Your pharmacist should be able to provide one of these boxes. Make sure that the box you are getting is big enough and that you have checked with your pharmacist that all your drugs are suitable for storing out of their original container. Some pills may deteriorate if not kept correctly. Setting an alarm on your mobile phone or watch can serve as a useful reminder to take your pills. Keeping spare doses of pills in your bag, jacket pocket, at work or college, at a friend‘s or in the glove compartment of your car can mean that you have a dose available if you forget to take your pills or are unexpectedly away from home. If you need to take your HIV treatment on an empty stomach, try taking your pills just before you go to bed. It‘s normally necessary to have a twohour gap between eating and taking your medication, to take your pills on empty stomach. You should then wait at least 30 minutes before eating again. If you have to take your HIV treatment with food, it‘s useful to know that it‘s usually not necessary to eat a full meal. A bar of chocolate or a bowl of cereal is often sufficient. Think about how going away for a break or on holiday could impact on your adherence. This could include the effect of travel on the times you take your medication, particularly if you are travelling a long way involving a changed time zone. You should try and ensure that you take your medication at the same intervals. Make sure that you take enough medication with you, as securing more supplies might be impossible. You should also travel with your medication in your hand luggage as this is less likely to get lost and means that your medication is close at hand should you need to take any during your journey. If you are flying or travelling across borders consider getting a letter from your doctor giving the name and doses of the medications you are taking and explaining that you need to have the medication with you at all times. This will help ensure that you are allowed to carry the medication in your hand luggage (in case the airline is imposing any restrictions on what can be carried) and it may help you with customs officials should you be stopped. This letter doesn‘t have to mention HIV.Breaking your routine may also have an impact on adherence as you may be away from prompts that helped you remember to take your medication. 113 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Think about what these might be and how to overcome them. Taking your medication away from home may mean that there is an increased chance that you will have to take it with people who do not know about your health, or who you do not want to know about it. Plan in advance how you might manage this. Simple things such as having a bottle of water by your bed might give you the privacy you need to take your medication. If you are going out for the night and think that there is a chance that you may not go home before your next medication dose or doses, then take enough medication with you to cover that period. Be aware that door staff may not be able to recognise prescription medication and some people are asked what their anti-HIV drugs are or have had them taken away when trying to get into some clubs. Also if you are going out and are planning to drink alcohol or take drugs which might affect your memory, then try to plan in advance how you might overcome this. This could involve setting an alarm on your watch or telling a friend to remind you when it is time to take your medication. If you are concerned about possible interactions between your HIV medications and recreational drugs then speak to your doctor or another member of your healthcare team. They should be able to offer advice on safely minimising interactions. Do not skip doses. If you are having on-going difficulties taking your medication, or are worried, ask for help immediately. Staff members at your HIV clinic are there to help, and there are other sources of support. As already mentioned, one of the possible consequences of not taking HIV treatment properly is that your virus will develop resistance to anti-HIV drugs. HIV reproduces itself very quickly, making billions of new viruses every day. Because the virus often makes mistakes when copying itself, each new generation differs slightly from the one before. These tiny differences are called mutations. Some mutations occur in the parts of HIV which are targeted by anti-HIV drugs. This can result in strains of HIV developing that are less easily controlled by drugs. These HIV strains are called drug-resistant. Drug-resistant strains vary – some may be highly resistant to anti-HIV drugs while others may be less so. When an anti-HIV drug is started, HIV that is fully susceptible to that drug disappears rapidly and drug-resistant viruses remain. If the HIV replication is not fully suppressed, these resistant viruses can continue to reproduce themselves despite the drug's presence. Resistance is an important reason why HIV treatment can fail. Viral load, which should drop when you start a new drug combination, will increase again if drugresistant HIV is able to emerge. Taking your HIV treatment in the correct doses, at the right time, observing any food restrictions and avoiding interactions reduces the risk of resistance from developing. Before you start HIV treatment for the first time, or change treatment because your viral load is detectable, you should have a resistance test. The results of a resistance test help you and your doctor to choose the combination of drugs that is likely to be most effective against your virus. It is important to be honest with yourself and your doctor about the way you live your life. If it is probable or likely that you will not take your HIV treatment properly, then it is important that your doctor knows this. This will allow your doctor to prescribe a combination of anti-HIV drugs that has a lower risk of resistance. The aim of HIV treatment is an undetectable viral load. If you have an undetectable viral load, your HIV cannot become resistant to the anti-HIV drugs that you are taking. However, resistance can develop if your viral load becomes detectable and you continue to take anti-HIV drugs. If your viral load is still detectable six months after starting HIV treatment, or falls to undetectable levels and then becomes detectable again in two consecutive tests, you should change HIV treatment. Changing HIV treatment promptly can reduce the risk of drug resistance.But before you change treatment, you should have a resistance test to help 114 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives select the most effective combination of anti-HIV drugs. If you are changing HIV treatment because of resistance, it‘s very likely that you will need to start a new combination of drugs. Once resistance to one anti-HIV drug has developed, this may mean that your HIV is also resistant to other, similar anti-HIV drugs you have not yet taken. This is called cross-resistance. Cross-resistance can affect all the currently available anti-HIV drugs to some extent. However, cross-resistance is not inevitable if you develop resistance to one drug, and the use of resistance tests will help you and your HIV doctor select the anti-HIV drugs that are likely to be most effective against your virus if resistance does develop. Resistance tests There are blood tests that can detect whether the HIV in your body is resistant to anti-HIV drugs. Drug resistance tests are used when a person is first diagnosed with HIV in case they have been infected by a virus which is already resistant to one or more drugs. It is also ideal for everybody who is about to start HIV treatment for the first time to have a resistance test. You should also have a resistance test whenever you are changing treatment because your viral load is detectable.Resistance tests also help to guide the choice of treatment in women who are pregnant, and in children. Resistance tests will also be more accurate if done while you are still taking a failing combination rather than after you have stopped it. Once you stop taking a drug, the sensitive viruses start to grow rapidly as they are usually more ‘fit‘ than the resistant viruses. The test may give the wrong answer as it may not be possible to detect the smaller number of resistant viruses. There are two main methods of testing for HIV drug resistance: Genotypic tests which look for specific mutations in HIV's genes that are known to be linked with resistance to anti-HIV drugs. Phenotypic tests which measure the concentration of a drug required to reduce viral replication by a set amount. When resistance to a drug begins to develop, higher levels of that drug will be required to stop HIV growing. A significant proportion of people contract HIV that is already resistant to one or more anti-HIV drugs. This can happen either through sexual transmission, through contact with infected blood (e.g. through injecting drugs), or from an HIV-positive mother to her baby. Becoming infected with a drug-resistant strain may limit your treatment options in the same way as developing resistance while taking treatments does, narrowing down the range of drugs you might benefit from. If you have a detectable viral load and drug-resistant virus, then there‘s a risk that you could pass on a drug-resistant strain of HIV to someone else. The reason why taking HIV treatment properly (adherence) is so important is because poor adherence can lead to the development of resistance. This is a term doctors often use. It means that the type of HIV you have is, or has become, resistant to some anti-HIV drugs. In other words, the drugs don‘t work well any more. Every time HIV makes a new copy of itself, it is slightly different.Often these differences are not important but sometimes the new copy is different in a way that is ‗resistant‘ to the drugs you‘ve been taking. This means that it will be able to reproduce again, even when you take the drugs. It is possible to have resistance to some drugs even before you start HIV treatment. You may have been infected with a strain of the virus that is already resistant to some anti-HIV drugs. If you are taking combination therapy, it is important to make sure that enough of the drugs are in your blood all the time to do their job properly. Missed or late doses could mean there are reduced levels of the drugs in your blood. This could allow the virus to make more copies of itself, including drug-resistant copies. Drugresistant HIV could lead to the treatment not working, and you not being able to use the same drug (and, sometimes, other drugs in the same class) again in the future. The next combination of 115 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives drugs you are given might be more complicated to take, or cause more side-effects. If you are able to take each dose of the combination therapy at the right time each day, then the development of drug-resistant HIV is unlikely. That means the drugs will work for many years. If you do develop resistance to some drugs, do not panic - there will still be other treatment options available to you. There are other drugs that are effective against drug-resistant strains of HIV. However, it is very important that these drugs are taken properly. If not, you may develop resistance to them, and this could mean that your HIV becomes very hard to treat. Properly using condoms are a very good way of preventing sexual transmission of HIV. If you are already HIV-positive, you can be infected with another strain of HIV that could be drugresistant. This is called super infection. If you would like to discuss any concerns you may have about this, such as how it might affect the sex you have, a health adviser or health trainer at your HIV clinic or another member of your healthcare team should be able to help. CLINICAL TRIALS HIV spreads most commonly through unprotected sexual contact with an infected partner. It can also spread through contact with infected blood, usually through needle sharing amongst drug 116 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives users. Mothers can pass HIV on to their babies, though the risk of this is much lower if anti-HIV drugs are taken during pregnancy. It is very difficult to produce a vaccine against HIV as the surface of the virus constantly changes. So the only way to prevent infection is to avoid contracting the virus. The term clinical trial is used to describe many different types of research studies. There are five main types of clinical trials: Treatment trials Study new medications, new combinations of existing medications, or new types of therapies Prevention trials Look for better ways to prevent disease—sometimes with medicines, sometimes with behavior changes Diagnostic trials Test the best way to detect disease or changes within the body Natural History trials Study the natural progression of disease in the human body Quality of Life trials Study ways to improve aspects of life for people living with illnesses A vaccine fools your body's immune system. You are injected with a harmless version of the bacterium or virus that usually causes the illness: it is either dead, or modified - attenuated - so that it cannot attack your body. But your defender cells still learn what it looks like. If you ever encounter the real thing, they will remember, and respond immediately to destroy it. The Basic Components of Clinical Trials The scientists and health care providers who manage clinical trials are usually called investigators. The people who join clinical trials are usually called participants, but may be referred to as volunteers or study subjects. ALL clinical trials are voluntary – you never have to participate in a clinical trial unless you want to. Each clinical trial has a written plan, or study protocol, that describes the goals of the study, how long the study will last, which people are eligible to participate (also called inclusion and exclusion criteria), and what tests and procedures are required of each participant. Inclusion and exclusion criteria are the guidelines used to determine who can and cannot participate in a specific clinical trial. Inclusion criteria are requirements that a person must meet to participate (such as CD4 cell count, viral load, or age). Exclusion criteria are factors that prevent a person from participating either for his or her safety or to make it easier to understand the study results. For example, people might be excluded for having liver problems, or if they have already used a drug that is being studied. Each participant in a clinical trial must sign an informed consent. When you sign this document it means that you understand the details of the study and you agree to participate. You may also want to take the document with you and talk about the study with your health care provider, family, or friends before you decide to participate.If your native language is not applicable, you may ask if translation is available. It is important that you truly understand the study and what you will be asked to do. If you have any questions, be sure to ask the study staff. It is their job to make sure that, when you sign, you are making an informed choice. You may be paid for travel expenses to and from the study site and 117 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives for your time. Childcare may also be provided. You can choose to drop out of a study at any point. Stages of Treatment Trials The most common type of clinical trial in HIV is a treatment or drug study. There are four stages, or phases, of clinical trials for new treatments. With each phase, a little more is known about the treatment being studied. Each phase has a different purpose and helps researchers answer specific questions about the drug in trial. Phase I: Is the drug safe? A Phase I trial tests a drug in a small number of participants (usually less than 80) to find a safe dose and to record the side effects of the drug. Phase I trials usually last a few days to a few weeks. Scientists study body systems and interventions which can spring the body into protecting itself against HIV/AIDS. Phase II: Is the drug effective? A Phase II trial tests a drug in a larger number of participants (on average 100 to 300) to see if the drug works. Phase II trials may also test different doses of the drug to find which dose works best. A Phase II trial usually lasts six months to one year. The most promising models are tried out in laboratories to determine HIV neutralizing antibodies that shield shells against infection from a wide array of HIV strains collected from infected people worldwide. Drugs which trigger off antibodies help scientists to design vaccine candidates. Phase III: Is the drug safe and effective in larger groups of people for longer periods of time? A Phase III trial tests a drug in a very large group of participants (typically 1,000 to 3,000). Phase III trials gather more information about the safety and effectiveness of the drug by comparing it to an existing medication. Successful models are then tried in animals to check for safety and efficacy. Phase III trials generally last two to three years. Phase IV or Post-Marketing studies: If successful, the drug is licensed for trial in human beings. The first phase is done on a few people to test the safety of a new vaccine. If proved safe, the sample size is increased to test both the safety and immune response in the body. If these provide the desired result, the final phase is done on a bigger sample of people. Once a drug trial has completed the first three phases of research, the company that makes the drug submits the study data to other authorities like the ministry of health and world health organization for approval. If the candidate passes all these tests, it is licensed for use in humans.Accelerated approval happens faster than regular drug approval and it may put special restrictions on how the drug can be used. However, even if a drug gets accelerated approval, the drug company must continue doing long-term research on the drug for it to get full approval. Who should participate in a Clinical Trial? 118 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Choosing to participate in a clinical trial is a big decision. There are risks and benefits to consider when making the choice. Risks Unpleasant or serious side effect You may have to stop all current medications, including any HIV medications You may receive a placebo (sugar pill) There is no guarantee that the experimental drug will be an effective treatment for you Benefits You may experience health benefits from a new treatment that is not yet available to the general public Most trials provide free laboratory tests and expert care for the purpose of the study You are contributing to the development of a new medication or increasing understanding of HIV disease It is important to participate in research because HIV and some of the HIV drugs act differently in our bodies. More information is needed on correct drug doses for persons, differences in lab tests such as CD4 cells and viral load, how opportunistic infections and gynecologic conditions affect HIV positive people, and what side effects are likely to affect people. The only way to find out this information is to join clinical trials. 119 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives YOUNG PEOPLE -FEELINGS, SEX & RELATIONSHIPS Working out who you are, what sex means to you and what you think a good relationship should be is a complicated business! But, it is a massive and really important part of growing up. Being attracted to someone can be exciting but you may feel quite anxious, wondering if they feel the same for you. If you ask them out and they refuse you may feel rejected. You may be concerned that if people find out who you are interested in, they may tease you about it. Some people are so worried about this that they find it difficult to start having a relationship. You may find that you are only attracted to people of the same sex or only to people of the opposite sex - you may be attracted to both. When it comes to asking someone out / asking someone on a date / asking someone you fancy if they would like to spend more time with you or any similar question, the main thing to remember is that if you do not ask, you will never know'. What is the worst that could happen? They say "no." Well, that is not the end of the world - and anyway, they might say "yes", you won't know until you ask. There is no exact formula to follow when asking someone out - it can be different in every situation. There are lots of different types of relationship, from casual sex to marriage. People from some backgrounds often get married to someone they have only met a few times, and then begin the process of getting to know them and loving them through time. In other contexts, people try relationships out with different people, and it can take a while for them to find out what they want and what works. Some people have lots of relationships. Some people have a few or one long one. Some people do not want a close relationship at certain times in their life.All relationships are different, but they usually all have one thing in common - when you are in a relationship with someone it usually means that you both like each other (and fancy each other!) more than anyone else. It is completely fine not to be in a relationship until you are ready. Being in a relationship should be a great experience for you and your partner. There may be some ups and downs, but there are a few important things that should be there: Respect – It is really important that you understand and value the person that you are with and respect them for who they are. Honesty – You also need to be able to show them who you are – let him or her know how you‘re feeling and what you think about things. Good relationships involve speaking openly to each other. Trust – Relationships shouldn‘t make you worried or anxious about what the other person is doing, you should be able to trust them, and feel secure that they want to be with you. Your own separate lives, with other people you can trust – You shouldn‘t cut out friends, family or other important people in your life because you‘re in a relationship. Make time for your friends and don‘t give up on things that you do independently from your partner. 120 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Equality – Relationships should be fair, with both people sometimes making compromises for each other. You shouldn‘t feel as if your partner has power over you, or like you can boss your partner around. Unhealthy relationships If the person you are in a relationship with is making you feel bad in some way, this is not a great relationship! If your partner ever says things to insult you, tries to control you, forces you into anything sexual that you are not comfortable with, tries to isolate you from the other important people in your life or disrespects you, then you should not have to be with them. Having a monogamous relationship means that for as long as you stay together, you will only be physical with each other-you won't do anything sexual with anyone else. The advantage of this is that you are less likely to catch any sexually transmitted infections, if you stay with just one partner (as long as they don't have any other partners or STIs!). If you have multiple sexual relationships, with more than one partner at once, you are more at risk of catching and passing on sexually transmitted infections, if you do not use a condom. Sex is an important part of our relationships. Not just sexual intercourse ('going all the way') but kissing and touching each other for pleasure.Although, just because you are in a relationship with someone, it does not mean that you have to have sexual intercourse or do anything else that you do not feel comfortable with. If you are thinking of having sex with someone, always try to make a decision about what you do and do not feel comfortable with. Ending a relationship Relationships break up for lots of reasons. For example, because one person felt that the relationship was unhealthy. Sometimes just because they become less close or want to do different things. It can be difficult to break up because you may feel upset and feel like you are hurting someone. But sometimes it may be a relief for both of you. Talking about your feelings can help. It can stop a lonely feeling and chances are you will discover other people have had the same feelings. Realizing other people have been in the same position helps and you may learn from their experience. Choosing who you talk to and when is important. It may be someone you fancy or someone you are going out with. If these people are connected with the feelings you have, it can sometimes make it more difficult. The person you talk to should be someone you feel easy and relaxed with and can trust. It might be a parent or guardian, especially if you have a good relationship with them. Or it might be that a sister or brother or other relative would be better. Some of your friends' parents might be approachable or you might have a friend who would listen. Talking to people who are a bit less close to you might be good too like a teacher or someone at a youth group or a medical person such as a doctor. Talking about things can be hard especially if they bear difficult feelings. But it is worth remembering that very often the reaction you get will be helpful and understanding. You may wonder why you got so worked up in the first place. If you are thinking of having sex, or being intimate (doing any sexual stuff), it's up to you to decide when the time is right. Whether it is your first time or you have had sex before, it is perfectly natural to wonder whether you are ready to have sex with somebody, or whether you want to continue having sex with him or her. You can ask yourself these questions to help you decide: Is this your decision, or are you thinking about having sex because someone else wants you to? Maybe you are not sure you are ready, but your partner is keen? Or perhaps there's a bit of ‗peer pressure‘ – all your friends seem to be having sex, so you feel you should be too? Remember that if you do decide to have sex, it‘s 121 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives completely fine to stop at any point, or not to do it again if you don‘t want to. If you recognize any of these phrases, then you should think carefully! These are not the right reasons to have sex. A partner who says things like this is probably trying to put pressure on you and might not really care whether you are ready or not – this person doesn‘t respect your feelings, and they‘re probably not the right person to have sex with. Many of your friends will only be saying this sort of thing because they think everyone will laugh at them if they admit they‘ve never really done anything! Besides, being sexually experienced at a young age doesn‘t necessarily make someone mature. If you‘ve only just met your partner, or don‘t really know them, then sex may not be a good experience because there won't be much trust between you. Sex can leave you feeling vulnerable afterwards in a way you might not be prepared for. Usually, you will have better sex with someone you know really well, are comfortable with, and who you can talk to openly about relationships and feelings. If you don‘t trust your partner enough not to laugh at you or you don‘t feel you can tell them whether you‘ve had sex before, then it‘s far better to wait until you can. And if you think you‘ll have to drink a lot of alcohol before you do it, so you feel relaxed enough, or you only find yourself thinking about having sex when you‘re drunk, then that suggests you‘re not ready. Being honest about how you‘re feeling will make it better for both of you, and will make sex better in the future. Sometimes talking about these things can take a little practice, but you need to talk about your worries and concerns and also what you want! It is really important that you know how to protect against pregnancy, HIV and other sexually transmitted infections or diseases. Again, this is something you need to talk to your partner about before the event, so you are both okay about what you are going to use. It is important to get your facts straight as well, a girl can get pregnant the first time she has sex!You may decide that you are ready to have sex, or ready to do something sexual, but it might be that your partner isn‘t, even if they have had sexual partners before. For sex to work, you both have to be willing to do it.Don‘t ever pressure anyone to have sex if they‘re not sure – this is very wrong, and it‘ll cost you your partner‘s respect and the respect of other people. Also there‘s a fine line between pressuring someone to have sex and forcing someone to have sex – if you put too much pressure on someone, it can become force – and if you force someone into sex, you can be prosecuted for rape. Sex has to be consenting from beginning to end - if your partner changes their mind half way through and you keep having sex with them, this is assault. All over the world and probably even just on the street that you live on; people have really different attitudes to sex. For some people sexual feelings are bound up with love and close relationships. Some people think sexual intercourse should only happen within marriage. For other people sex and love are two different things. Your views on sex could be informed by your faith, beliefs or religion. You may have a different attitude to sex than that of your family. Even if everything goes well, keeping sex (and all the emotions that go with it) a secret can be very hard – so, if possible, you should make sure you have someone else to talk to that you trust. But remember, the decision to have sex should be an agreement between you and your partner, and while other people may help or influence your decision, they shouldn‘t make it for you. The age of consent differs between countries. In most countries, it ranges between 16 and 18. So why do countries have a legal age for having sex? Because this is the age when the government believes young people are mature enough to handle the responsibilities that come with having sex. All too often people think they are ready when they‘re not. Age of consent laws are also designed to prevent older people from taking advantage of children and young teenagers who may not understand the consequences of having sex, or even what sex is. It‘s natural to feel a 122 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives little embarrassed and awkward both the first time, and afterwards, when you have sex. But it‘s more important to feel good and trust your partner, than to know a lot about how to do it. Don‘t worry if your first time doesn‘t go completely smoothly, so long as you and your partner are comfortable with each other you can practice together. However, if you are feeling worried because you don‘t know enough about good relationships, your body and protecting yourself against STI‘s and pregnancy then make sure you get knowledgeable first! A 'virgin' is traditionally seen as someone who has never had sexual intercourse before. However, people have different ideas about what 'losing your virginity' means. For some, it's having heterosexual sex for the first time. For others, it can mean having any sort of sex – including gay or lesbian sex – for the first time. Does oral / fingering / anal / hand jobs count as losing your virginity? Whether you think these things 'count' or not, don't forget that all of them can transmit STD‘s. And whatever you think 'being a virgin' means, remember that the most important thing is making sure you are ready before you do anything sexual, whether it‘s the first time or not. There's nothing wrong with being a virgin and you shouldn't feel like you have to go further then you are comfortable with because of peer pressure. Be honest with your partner. There's nothing embarrassing about telling them that you haven‘t been with anyone else. If you're close enough to someone to be thinking about having sex, you should be close enough to be able to talk honestly to him or her. Again, it is usually better to have enough of a trusting relationship to chat openly about your experiences. You deserve not to be judged. If anyone makes you feel bad for things that have happened in your life, they are probably not good enough to give your time to. Remember that there is no definite way of knowing if a girl is a virgin or not, a lack of bleeding is not proof. In some countries, it‘s common for young people to get married. Sometimes families arrange the marriage, sometimes not. You may have already been in a relationship with your partner, or you may not know your partner very well. Whatever the situations, talk to your partner before sex, and do not rush into it on your wedding night. First-time sex can hurt and some girls or young women do bleed a little bit. The bleeding usually occurs because the girl has a hymen which breaks the first time she has sexual intercourse. The hymen is a small piece of thin skin which goes across the opening of the vagina and protects it when she is young. It has some gaps in it where the blood can come out when she has her period. Sometimes a girl might already have broken her hymen without knowing about it. For example, this can happen as a result of playing sports or horse riding. Sex the first time shouldn't hurt for a boy, but he can make it easier for his partner by being gentle and taking it slowly - try to make it special for you both. Some couples say that on their first time they both enjoyed it; other couples say that neither of them had an orgasm. It's an individual thing, just try not to expect too much from your first time - like anything else, it takes a while to learn about your body and about your partner's. Just make sure that you're ready and you've got contraception sorted out. Being unsure Many people continue to question who they are attracted to, and whether this makes them gay or straight or bi or something else. Some people may decide that they don‘t need a label for their sexuality at all! Remember that whatever you decide, it doesn‘t have to define who you are. Make a list of all the things about you that you can possibly think of. Who you are attracted to will probably be one of many, many things that make you, you! Many young people who have alternative sexual identities face stigma and discrimination. Remember that there will be others out there who have experienced similar issues. Please take care of yourself, educate yourself 123 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives about HIV, protect your partners, honor and cherish them. And never let anyone make you feel inferior for being who you are. Choosing the right time There is no best way to come out to friends and family. Different approaches are right for different people, depending on their situation and relationship with the person they want to tell. Some people, for example, find it easier to write everything down in a letter, so that they can explain fully what they want to say. This can also give others the time and space to react and come to terms with initial feelings of shock. However, open and frank conversation is a vital part of coming out, and helps to move a relationship forward toward a point of mutual understanding and acceptance. These conversations need time and commitment, so it is best to choose a moment when neither of you will feel rushed or distracted. Being tired or emotional can also make talking more difficult, and lead to people saying things they may otherwise not have said. Coming out does not mean that you have to tell everybody. Many LGBT people chose to come out first to people who they think are more likely to react positively. This not only helps them get an idea of how people may react, but often means that they will have someone to support them when they come out to others. LGBT people often say that they have been surprised by the positive reactions they have received when coming out. It is common for people to be honored that you feel close enough to share this important part of yourself with them. This acceptance can be a valuable source of strength and helps many LGBT people to have the confidence to express their sexual or gender identity more openly. However, many LGBT people also have to cope with negative reactions when they come out, which can be very painful, particularly when it is someone who you care about. It is important to be prepared for someone to be shocked; they may feel uncomfortable and not know how to react. This doesn't mean that they will not, with time, accept the news. Try to encourage them to ask questions, as this can help them to understand. Some people may never be able to accept your sexuality or true gender identity. This is not something that you can change, and it can be very hard to feel rejected by someone you are close to. It is important not to let negative reactions stop you from coming out to others, as everyone will react differently. Reminding yourself why you have decided to come out can help you stand by that decision. There will be people who hate you because you have discovered who you truly are but know that you have the confidence to finally stop pretending. Some people will love you for who you are, these people have confidence. They know who they are and you know who you are. Timing for intercourse Wondering whether to have sex or to do other sexual activities with someone can be tricky, and people have really strong, varied views on it. Sometimes young people‘s views on sex are influenced by their background, sometimes by their friends. As a young person, it‘s good to learn about why people have sex, how young people can make decisions about their lives and what can happen after sex. Sex - or sexual intercourse - can result in pregnancy or sexually transmitted infections (STIs) such as Chlamydia, HIV or Herpes. There are many STIs that you can get through penetrative or oral sex. Sex can also impact on your emotions and happiness, both in a positive way and a negative way.Being knowledgeable will make it easier to make decisions about your body, having sex or not having sex, your sexual health and your relationships. Have a look through the different topics listed on this page to learn more about sex, sexuality and looking after yourself and your body. You will find information about puberty, having sex for 124 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives the first time, sex and alcohol, using condoms and many other topics aimed at helping you to protect your sexual health and stay happy and confident. Many people have questions about how to have sex, but it isn't always easy to get good advice. Having sex can sometimes mean a number of different sexual activities, but usually it means sexual intercourse. The most common definition of sexual intercourse is an act that involves a man putting his erect penis inside a woman's vagina. Sexual intercourse might also be used to refer to sex acts between two men or between two women. Sexual intercourse between a man and a woman usually starts with them both getting sexually excited. This is sometimes referred to as foreplay, and might involve kissing and cuddling, touching each other and other sexual activities. Foreplay is important as it means a woman's vagina begins to get moist and a man gets an erection. If the woman's vagina does not get moist enough, then having sexual intercourse could be difficult or painful for her. If a man and woman are having sexual intercourse, then using a contraceptive properly, every time, will prevent the woman becoming pregnant. If two people have sex and one of them has a sexually transmitted disease (STD) then they could pass it on to the other person. Using a condom is the best way to prevent any infection from being passed from one person to the other. If a couple is going to use a condom for protection against pregnancy or infections, they should put it on the man's penis as soon as he gets an erection. Some men say they worry about using condoms in case they lose their erection or have difficulty putting the condom on. You could get some condoms and practice beforehand. Condoms come with instructions in words and pictures which show exactly how to use them. After the condom is on, the man or woman can guide his penis into her vagina. The couple then moves their bodies so that his penis moves up and down inside her vagina. This usually rubs the penis and makes the man sexually excited so that he has an orgasm. The movement might also rub the woman's clitoris (or sensitive areas inside her vagina) so she can have an orgasm. But this often takes practice and a bit of experimentation to get it right! Having sex does not usually hurt, though first time sex may be a bit uncomfortable for a woman because her hymen (a thin layer of skin that partially covers the entrance to the vagina) may be stretched or torn. Some girls are born without a hymen and some tear theirs when inserting tampons or during sport. A torn hymen may cause a little bleeding, but it does not usually last long. Sex is not usually painful for a man. The best way to ensure pain free sex is for both partners to relax and take their time. After the first time, sex should become more comfortable. The vagina is very stretchy and will usually accommodate a penis (even a large one) with ease. However, a woman may experience pain when having sexual intercourse if her vagina does not produce enough natural lubrication. Extra vaginal fluids are usually produced when a woman becomes sexually excited to allow the penis to enter the vagina easily. If a woman is tense or rushing when she has sex, her vagina may not become moist enough to allow the penis to move in and out smoothly. Stress can also cause the muscles in the vagina to involuntarily tense up, making penetration difficult and painful. The best way to ensure pain free sex is for both partners to relax and take their time. Extra lubrication might also help, and can be bought from many chemists and some supermarkets. When using a condom, it is very important that a water-based lubricant (like KY jelly) is used, as oil-based lubricants like Vaseline can cause the condom to disintegrate. Different people have different opinions on this, and some say there are different types of virginity. But most people generally agree that if a man or woman has had penetrative sex, that is sexual intercourse, then they are no longer a virgin. There are quite a lot of different positions for sexual intercourse. One of the most common is the missionary position, where a woman lies on her back and a man lies on top of her. A man and woman might also lie on their sides, the 125 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives woman may sit on top of the man, or she may kneel on all fours while the man puts his penis into her vagina from behind. If a couple is in a position where the woman's clitoris is not being stimulated, they can do this with their fingers. Similar things happen to most people's bodies when they have sex - they get sensitive and warm and excited and may have an orgasm. Enjoying sexual activities with another person is possible whether you have an orgasm or not. Not being able to have an orgasm with another person does not mean that you do not fancy them or love them. Your emotions might be different each time you have a sexual experience, depending on the circumstances. Having sex can be one of the most intense and pleasurable physical and emotional experiences a person can have. But it won't always be wonderful. When sexual excitement builds up and reaches a peak a person might experience an orgasm, also called a climax, or 'coming'. The sexual excitement might start from someone masturbating on their own, or through kissing, masturbating or having sex with another person. Sexual excitement usually grows gradually and a person feels more and more pleasure and a kind of exciting tension. All the feelings of tension then disappear when the orgasm happens, and the person experiences feelings of intense pleasure. The feeling can be so strong that a person might not be able to see, or hear or think about anything for a moment. They might even groan and call out with the pleasure. Orgasms usually last only a few seconds but the feelings might last a lot longer. When a man has an orgasm he ejaculates. This means that sperm mixed with semen comes out of the end of his penis in a sticky white fluid. After a man has ejaculated he loses his erection and usually needs to stop for a while. When a woman has an orgasm, her vagina often becomes very wet, but she can continue being sexually aroused as long as she likes. Some women can experience more than one orgasm without stopping. If a person doesn't have an orgasm, it doesn't mean anything is wrong. In fact, worrying about reaching an orgasm or being nervous is quite likely to make it hard for a person to relax enough to have one. The time people devote to doing sexual things can last from a few minutes, to several hours, or even a whole day! The actual act of sexual intercourse will often last until a man has an orgasm (ejaculates or comes), although there's nothing wrong with stopping before this point. A man might find he comes very quickly the first time he has sexual intercourse.Usually sexual intercourse lasts longer as people get more experienced and know what to expect. But with a new partner it can take time for people to get used to each other. Sex will usually be different every time - it depends on how a couple feels and what they want. Only if you want it to be! Some people do make noises when they have sex. They might moan or groan with pleasure or even cry out.Some people talk to each other. Others don't speak or make any noises. But your body might make noises that you can't help - squelching and squishing. These might be embarrassing or funny, but they are perfectly normal. Sexual appetite is entirely a matter of personal taste. Some people have sex once or twice a day and others once a month. It probably varies for most people depending on whether they are in a relationship, how busy they are and how they feel. Most people think about sex far more often than they do it. Masturbation There is no physical reason why you should or should not masturbate. It is not true that you will go blind if you masturbate or that you will become weak or lose your health. A woman usually masturbates by rubbing, stroking or squeezing her clitoris. The clitoris is the most sensitive sexual part of a woman. She might also touch her breasts and other sensitive areas of her body. A man usually masturbates by stroking, rubbing or 'pumping' his penis, and may concentrate 126 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives particularly on the tip, which is the most sensitive part. Masturbation is sometimes referred to as playing with yourself, or, especially with men, jerking off, a hand job, or wanking. People do not necessarily begin masturbating when they reach puberty. Some people hardly ever masturbate, and others masturbate a lot. It varies according to how a person feels. Many people masturbate even when they are in a relationship with someone. Masturbation can last as long as you want, but generally people masturbate for between a few minutes and half an hour. It is not possible to masturbate too much, though you should stop if you start to make yourself feel sore. Some people think that if a man doesn't masturbate his testes will fill up with sperm. This is not true; the sperm are just absorbed into his body. It is also not true that women who think about sex or masturbate are 'easy'. These are some useful things that would be worth thinking about if you want to remain active, healthy and having sex! Respect yourself and respect your body Only you can do this. Unprotected sex will put your body at risk. The risks involved can have very serious consequences. Respect others you meet Make sure you are in it for the same reasons as each other. Make sure all involved are happy with the situation. Think not just about your emotions but the other person's also. Have the confidence to make the right choices Don't do anything that you don't want to do. If you're not comfortable with something don't do it. Protect yourself; be confident enough to suggest using a condom. If you follow these simple suggestions you are more likely to be able to continue having fun and enjoyment. Sex, Fun & Safety One of the most important ways to protect your sexual health is to be knowledgeable. It is important to know how to prevent pregnancy and STIs, but also to understand the law, know your sexual rights and watch out for how alcohol and drugs can be a risk! The more you know, the better you will be able to make decisions about your body and your life. New technology creates loads of new ways to make friends and talk to them. For many young people, chatting to mates on Facebook, by text, by Blackberry messaging, on forums or on Skype to name but a few, is as important as hanging out face to face. You can increase the number of friends you have and link up with more people. Lots of people like to do sexual things through messaging, or through talking on the phone. It could be through writing things, saying things or sending pictures to someone else. This may be something that you choose to do at some point in life. Even if it sounds a bit strange – ‗cybering‘ is a form of safe sex - you won't get any STDs from cybering with someone! As online networks get larger, it‘s good to be sure that you know who‘s a real friend and who‘s just a part of your network. ‗Sexting‘, that is sending sexual images or messages to others, is quite common among some groups of young people. But you should never feel under pressure take part in ‗sexting‘ with anyone if you don‘t want to, whether that‘s your partner or a person in your wider network. There is always the option of saying no if you don‘t feel completely comfortable or are worried about ‗exposure‘. Also, it is important to be aware that being in possession of a sexual photo of someone who is underage can be illegal, even if it is a photo of yourself. This is because in the 127 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives eyes of the law it‘s basically child pornography. Make sure you know how to block people on Facebook, blackberry messenger or other messaging devices. That way, you don‘t have to put up with unwanted requests or abusive people. Some older people can even lie about their age just to connect with young people online, so be smart and tell a friend, family member, or the police no one should judge you for being smart and keeping safe. Exposure is when someone shares or lets other people see sexual images of someone, without their permission. If you decide to send a sexual image or message to someone through the Internet or a phone, remember that they could do anything with it, at any time. Even if they keep it to themselves forever, consider that their phone could get stolen or looked at by a friend. If your partner has sent you sexual images or messages, before you let anyone else see them, stop and think about how it could make your partner feel, or what could happen to them. ‗Exposing‘ somebody is a serious form of bullying. Even if you are not actually giving the images or messages to other people, showing them can still cause a lot of harm. Remember also that owning these images in the first place may be highly illegal, so you may be putting yourself at risk by showing them to others. If you have taken a picture, then you legally own it. Therefore, if it‘s been used in a way you don‘t like online, you can report it to the website and get them to take it down. And depending on the law in your country, an explicit picture of somebody who is underage can be taken down by the police. Try to find an adult, such as a teacher, youth worker or parent, to talk to if you are in a situation where somebody has messages or images that you don‘t want them to own. Some people meet their boyfriends or girlfriends online or through other technology. But this is an area where you have to be really careful - get it wrong and it could cost you your life! Look below at tips for staying safe. Meeting people through the internet safely It‘s never completely safe to meet people you know only from the internet! If you do decide you're going to meet someone anyway, take a friend with you and make sure your parents or an adult know where you're going and who you're with. Make sure the person you're meeting knows that you've told an adult what you're doing. Go somewhere where there are lots of other people around - a busy mall, for example. Don't give out personal information over the internet - don't tell anyone your name and address, for example. If you use social networking sites, make sure that this information isn't on your profile and that you know what your privacy settings are. If someone you know from a chartroom or board wants you to send them pictures or personal info – stop and think! Why are they asking, and can you be sure they're who they say they are? Pornography Whatever your views or feelings are, as a young person it is good to get clued up about porn: 'Porn' can come in the form of sexual pictures, writing, photos, films or even chartroom talk. There are lots of different types of porn on the internet, and it ranges from quite mild stuff to things that are illegal. Porn actors are acting! Sometimes young people feel like pornography effects how people think that they should look or act during sex. The people in porn are actors, and as in any film, images are 128 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives manipulated to make their bodies look a certain way. The way men and women in porn look do not represent real bodies. In real life, men and women don‘t always wear makeup or sexy outfits. You should never expect your partner in real life to do something just because you‘ve seen it within porn. Porn videos take hours of footage, and edit them down to make the film look like the producers want, so you imagine how different the scene ends up being from real sexual experiences! Porn does not show you how to have safe sex. It is different to real sex! Girls have complained that porn can make it seem like sex is all about the man‘s enjoyment. For instance, it often ends after the man ejaculates (cums). In real life, sex has to be about both people, equally, to be good. Some of the best aspects of sex are often missed out in porn: kissing, cuddling, trust, communicating properly with your partner and getting to know them first! With real sex, you might have a chat and a laugh, and chat about what you like or dislike during sex. Some things are shown so often in porn that if you learn about sex through porn you may think they happen every time. Some people like anal sex or ejaculating on their partner, but they‘re not as essential as porn can make them out to be. Whatever you see in porn, real sex needs to be mutually consensual! This means everyone involved in any sexual act, whether that‘s kissing, touching, oral sex or penetrative sex, needs to want to be involved. People have different views on it: Lots of people find it offensive – so don't show it to other people or leave it where other people can find it. Deliberately showing it to people to harass them, or because you know that they don‘t like it, is a form of bullying. You do not have to see it if you do not want to: There's loads of porn on the internet, but if you don't like it, you don't have to look at it. Filtering software can be used to stop your computer from showing porn sites. If someone's showing or sending you porn, and you don't feel comfortable, ask them to stop. If they don't, then you should think about asking a teacher or parent for advice. This can be a type of abuse. There are laws about porn that might affect you: In some parts of the world, there are age limits on looking at porn, so make sure you're over the legal age. In many countries, if you are under the age of consent, it may be illegal for you to view all pornography, whatever type; pictures, films or written. In many parts of the world, some types of pornography are illegal, and you can get in trouble if it's found on your computer. The laws about what is legal are different in different countries, but pornography involving children or animals is illegal in most countries. People who have been found to have large quantities of illegal pornography on their computers have been sent to prison. 129 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Whilst some people use porn to find out about sex, there are other ways that you can learn about sex through the internet that can be more related to real life. You might find the internet especially useful if you‘re living in an area where sexual health information is scarcer– Websites about sex can be really useful, especially if you want to find out about things that you're not taught in sex education classes at school, or that you can't talk to your parents about. There are a few things you need to watch out for, though... Make sure you‘re sure that the information is accurate, and double-check it on a couple more websites if you‘re not sure. Anyone can put up a web page claiming that you won't get pregnant if you have sex standing up, for example - but that doesn't make it true! (It isn't true, by the way!) A good way to find a reliable website can be to ask a teacher, or your doctor to recommend a good one. To find what you want using a search engine, you have to use the right keywords. For example, if you just type "teen sex" into the search box, you'll probably notice that there are a lot of websites about 'teen sex' that don't give any advice at all – and, unless you're looking for pornography, they won't be any help to you. Try using different words, as well as teen or sex words like advice, help, or information.Some computer programs have special filters that are meant to stop pornography – they often look out for words about sex, and if they find those words, they might not display the website that uses them. The trouble is, this can sometimes mean that they also accidentally stop you from accessing advice about sex on the internet. Most public computers, in schools and libraries for example, use filters. Often, filters can be programmed to let certain sites through, so if you find that you can't access any useful site at school, ask your teacher if it can be allowed through. Filters can be turned on or off, whatever suits you. Most search engines have a button saying 'preferences' allowing you to put the filter on or off. Microsoft Windows TM also has a filter option that you can turn on or off.To change this, ask the owner of the computer. Okay, so there are dangers on the internet. You can find false information, you can lose control of the things that you upload and people aren't always who they say they are. But do not let this put you off! The web can also be a really valuable resource for sexual health information. Almost anything you could possibly need to know is out there somewhere, all the things you wanted to ask but couldn't go to your teachers or parents about.If you go to anything in real life that you found about from the web, you have to be really careful that it's safe. As well as sexual health information, the web can put you in touch with other people – if you're going through a difficult time, you can find other people who've had the same experiences and can help. Or maybe you have been through a difficult experience and want to use that to help other people. Alcohol, Drugs & Sex Sex, drink and drugs. Sound like fun? Well, they can be. But they also carry risks, especially when they‘re mixed together. People often have strong opinions about sex, drink and drugs – whatever your views, you will find that knowing more about the issues will help you to make your own choices. ―We had sex at New Year, which was very blurred as we were both extremely drunk... I do remember that we did not use anything and I was not on the birth control pill.‖ said a 15year-old girl. Sex can be nerve-wracking and people sometimes find that having a few drinks can relax them: For instance, your boyfriend may prefer having sex but the only way you can manage is when you get drunk because otherwise you are too scared or embarrassed. Drink and 130 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives drugs might make you feel less nervous about sex – but then if you need these things to feel comfortable, you are probably not with the right person, you may not be ready to start having sex yet, or maybe you just need to work on being more comfortable with yourself. If you want to have sex, you don‘t need to rely on alcohol and drugs to enjoy it, but you may need to practice talking to your partner about what you both want. Sexual ‗performance‘ can actually diminish after a night out. Alcohol can make someone less coordinated. And it is an anaesthetic. It numbs the genitals' nerve cells, making it more difficult to reach orgasm. Alcohol can also make it harder for boys to achieve an erection and for girls‘ vaginas to become lubricated. Drugs can have a similar effect. Some people take drugs to make them more sexually excited, to make them 'last longer' in bed, or because they think they will have a more pleasurable orgasm. However these drugs can actually cause erection and orgasm problems. You may hear stories about people having sex for hours while taking drugs, but that is probably because they cannot reach orgasm – it does not necessarily mean that they're having better sex! Drink and drugs can make you think less clearly. You may forget (or simply do not bother) to use a condom, which could lead to unwanted pregnancy, or a sexually transmitted infection (STI) being passed on. If you and your boyfriend/girlfriend want to experiment with touching one another, or try pleasuring each other without having full on sex, this is safe (you still need to make sure that you are both comfortable with what you are doing through). You may plan not to go further than this, but once again, drink and drugs can make you think less clearly about the decisions that are right for you.It is good to decide what you feel comfortable with when you are sober and can think for yourself! In many countries, it is against the law to have sex with someone if they are too drunk to make a decision about it. Sex has to involve the consent of everyone involved from beginning to end, and somebody who is drunk or has taken drugs may be more likely to change their mind half way through, and therefore no longer be consenting. Many people are sexually assaulted when they are drunk or on drugs. This could be because somebody has encouraged the person they attack to get drunk, or spiked their drink with stronger drinks. Or they may have just taken advantage of a person who got drunk of their own accord. It is vital that you know how to keep yourself and those around you safe: Keep an eye on your friends. If you go out, it is a good idea to have one person who stays sober for the night. Never leave a drink unattended in a public place. If somebody you are with is suddenly unwell or very tired, go home as a group. Have a plan for how you will get home safely at the end of the night. A lot of young people feel pressured into trying alcohol, drugs and sex by their friends, schoolmates and other people of the same age group – their peers. When this happens, it‘s called peer pressure. Peer pressure is the pressure that you feel to be like everyone else and fit in. It can be about all kinds of things, from fashion to dating and beyond. It is not always a bad thing, and it plays a big role in helping to shape our identities, how we talk, act and dress. But peer pressure can also cause people to do things that go against their will or beliefs – and with drink, drugs and sex, this is often what happens. You can be in control. You may have your own reasons for wanting to try drink, drugs or sex, but if you‘re only doing these things because of peer pressure, then this is the wrong reason. It‘s not always easy to say ‗no‘, but if the people you‘re with are really your friends, they‘ll respect your decisions. 131 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Stand your ground and do what feels right for you, not anyone else. Ultimately, it is up to you to assess the risks and make decisions. If you are going to drink, take drugs or have sex, be aware of the problems they can cause and take measures to minimize the risks to yourself and those around you. If you are going to drink, do it responsibly and make sure you‘re around people you can trust. If you‘re going to do drugs, the same applies, and you should also make sure that you know the score about what you‘re taking. With sex, make sure that you use a condom to prevent STIs and pregnancy, or if you‘re with a regular partner who you‘re certain doesn‘t have an STI, other birth control methods that can prevent pregnancy. Keep in mind the law. Almost all recreational drugs are illegal, and they usually carry heavy penalties. The legal drinking age varies between countries but is generally at least 18, so make sure that you know the age of consent. Combining drink and drugs with driving is illegal in almost every country and is always a bad idea. Don‘t let peer pressure dictate your decisions. Work out what‘s best for you as an individual, and stand up for yourself. If you don‘t want to drink, take drugs or have sex, then that‘s perfectly fine, and you shouldn‘t let anyone tell you differently. Teens, Sex and the Law It seems too many teens that adults are always making a big deal about people having sex under the age of consent. Many young people think that if they feel ready to have sex and they use protection, it is nothing to do with anyone else. But everyone needs to know what the law says about having sex and why we have laws about sex at all! The age of consent is the age when the law says you are mature enough to be able to agree to have sex. In most countries, until you reach this age you cannot legally have sex with anyone, however old they are, even if you want to. Sometimes the law is slightly different when the partners are of a similar age, but there is usually still a minimum age below which sex is always illegal. Teens cannot get around the laws for smoking, drinking or driving because their parents say so, and it's the same with sex. The age of consent laws always apply; whether you're in love, have been together for ages, and even if you've had sex before. Although some young people are mature enough to know how to deal with it if someone tries to get them to have sex, many teens are not grown up enough to know what to do. Age of consent laws are there to protect young people from being exploited by adults. What the age of consent is depends on where you live - there are different age limits in different places, and in some places the age of consent is different for boys and for girls. The law can also change depending on how old your partner is, and whether they are in a ‗position of authority‘ – for example a teacher. If you are under the age of consent and you choose to have sex with someone who is over the age of consent, then they can be charged with the crime of 'statutory rape'. Some countries have different names for this crime, and some call it 'unlawful sexual penetration' or just 'rape'. This is when a person is pressured into any type of sexual contact that they do not agree to. This can include ‗direct abuse‘, such as inappropriate kissing, fondling of a person‘s genitals or other area of their body that they wouldn‘t want to be touched, or when a person is made to touch another person in a way that they are not comfortable with. It can also include ‗indirect abuse‘ which 132 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives includes a person knowing that another person is being mistreated, but not doing anything about it. If you know anyone who is being pressurized in this way, you should tell an adult who you trust about what's going on. A forced marriage is where one or both partners have not or cannot give their consent to getting married. This should not be confused with ‗arranged marriage‘ where parents or family arrange a marriage, but both partners decide whether they want to get married or not. Forced marriage is against the law in many countries, and it is a human rights violation under international law. Child marriage is considered to be forced marriage, because children are not considered capable of making an informed decision. It is really important to know the laws that are in place to protect you. If you are at risk or have been affected by any of the issues mentioned above, talk to an adult that you trust, or get in touch with an advice organization. Teens-Condom Tips When it comes to HIV infection, it is not trust that matters, but protecting oneself. People live long with the AIDS virus without showing any signs. Using condoms in a sexual relationship indicates awareness and responsibility to protect oneself ad care towards one another. Condoms are not for prostitutes, they can be used by anyone who wants to have a healthy risk-free relationship. Because if you want to have sex with someone, they are important! Sex can be great, but there are risks involved. Aside from all the emotional issues, you can catch infections, and a woman can become pregnant. So if you do not want to deal with these really tough situations, a condom is vital! Some people think it's the man's job to make sure he uses a condom; some people think contraception is up to the woman. They're both wrong - it takes two to have sex, so both partners should make an effort. If you're not responsible enough to sort out contraception, you're not responsible enough to be having sex. If you are sleeping with someone, you should have enough respect for them to protect you. Buying condoms can seem frightening or embarrassing, especially for a young person, but it is not really. You can get them in most pharmacies or drugstores and a lot of supermarkets sell them. In some countries, young people are entitled to free contraceptive advice and contraceptives from their doctor. But you don't need a prescription to get them, and often health clinics, family planning centers, and even schools have supplies of free condoms for teenagers. In most places, you can buy condoms whatever your age. If you are still too embarrassed to go and buy them, you can sometimes get them from vending machines (often in public toilets) or over the internet. Assuredly, you should put the condom on before there is any contact between the penis and your partner's body. Fluids released from the penis even very early on in sex can cause pregnancy or transmit an STI. So, when the penis is erect, open the condom wrapper. Do not do it with your teeth! This can cause tiny rips in the condom which you might not notice. Unroll the condom a little over the top of the penis - make sure that the roll is on the outside - if it's backwards then the condom won't unroll. If there's any air trapped in the condom, this can cause it to break, so make sure you pinch the end to squeeze any air out. Then just firmly roll the condom down as far as you can. If you want to use any lube, put it on the outside of the condom and make sure it's water-based lubricant. Oil based lubricants can weaken the condom and make it break. If a condom breaks while you're having sex, then stop right away and put a new condom on. While you're having sex you can sometimes feel if a condom has broken, but not always, so you should check occasionally that it's okay. If you think some semen has escaped from the condom you might want to think about 133 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives talking to your doctor about getting emergency contraception and an STD test. Some sexually transmitted diseases and infections (such as herpes) can be passed on by oral sex. When you use a condom for oral sex, you should change condoms before having vaginal or anal sex, because teeth may have made little holes in it. After he has ejaculated, a man using a condom needs to stop and take the condom off. If you carry on having sex, it can burst. If you want to carry on, that's fine, just put a new condom on again, and away you go. Never re-use a condom. When the man pulls his penis out, he should hold the base of the condom to make sure that it comes out, too. And when taking a condom off, don't just pull on the end. Roll it back from the base and throw it away safely - do not flush it down the toilet. You might also want to tie a knot in the end to stop it leaking. There are a lot of different kinds of condoms, but don't worry. Here are the variations you can get: Material - Most condoms are made from latex or polyurethane. The latex ones are a little stronger, so they give slightly better protection from STDs and pregnancy. A very small amount of people are allergic to latex, though, so they use polyurethane ones. Size- Condoms come in lots of different sizes. You can get longer or shorter or wider or narrower ones. If a packet of condoms says 'large' or 'small', this is usually talking about the width of the condom, not the length. Be honest! A condom that is too big may come off, and a condom that's too small might break. Most condoms that you buy in shops and vending machines will be a standard size. Lubricated- Some condoms are not lubricated at all, some have silicone-based lubricants, and some have water-based lubricants. Some condoms are lubricated with a spermicide (see below). Spermicidal - Some condoms have a spermicidal lubricant, which can help to reduce the likelihood of pregnancy. One of the most common spermicides is something called nonoxynol-9. This is a chemical that some people are sensitive to, and if it's used regularly it can cause irritation and increase the chance of HIV infection. Condoms lubricated with Nonoxynol 9 should not be used for anal sex. Ribbed - These condoms have little ridges running around them. These can make sex more pleasurable for both partners, and if they're used correctly (see below) then they're just as safe as ordinary ones. Ribbed condoms are the answer for people who complain "But I can't feel anything if I put on a condom..." Coloured - The natural colour of latex is a creamy white, so lots of condoms have different colours - some of them even glow in the dark. Again, if they're used properly, they're fine. Flavoured - Some sexually transmitted infections can be passed on orally, so it's a good idea to put on a condom for oral sex. Sometimes, people don't like the smell and taste of latex, so they use flavoured condoms. Reservoir tipped - Most condoms have a reservoir tip to catch semen, some have a plain tip. If they have a reservoir tip, be sure to pinch the end when putting them on - if they have air inside them, they can break when you're having sex. Then if you want to be safe, you will have to get one. Some types of contraception (such as the pill) are more effective than condoms for avoiding pregnancy, but won't reduce your chances of contracting a sexually transmitted infection. And if you are single, it does not hurt to carry condoms with you - just in case, and make sure that when you are not on a night out, you store your condom somewhere cool and dry to make sure it lasts well. They also have a sell-by date on 134 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives the packet – do not use condoms that are too old. It is scary enough having sex for the first without having to worry about using condoms, too. Contraception for Young People 'Birth control' is a term that describes things that stop a woman or girl from becoming pregnant, or giving birth. Birth control can mean a wide range of things – from 'contraceptives' (used to reduce the chances of a woman becoming pregnant) to other ways of avoiding pregnancy, like not having sex. If you don‘t want to have a baby, there are two main options – either do not have sex, or if you are going to have sex, use contraception. Well, here we are talking about having sexual intercourse, where a man inserts his penis into a woman‘s vagina. There are other forms of having sex – like oral sex, for instance – but the only one that‘s likely to get a girl pregnant is sexual intercourse. You might be thinking ‗yeah ok, I already know that girls get pregnant through sexual intercourse‘. But are you sure that you really know the facts about pregnancy? There are a lot of myths out there. Despite what you may have heard, a girl can become pregnant: The first time she has sexual intercourse. Even if she has sex before she‘s had her first period. Even if she has sex during her period. Even if a boy pulls out (withdraws his penis) before he comes. Even if she has sex standing up. Even if she forgets to take her pill for just one day. The only 100% effective way to avoid having a baby is to not have sexual intercourse. Many young people around the world choose this option. For some, this means not having sex until they are married. For others, it can mean different things, like waiting until they have found a stable partner who they feel comfortable with. You need to decide what is best for you personally – do not feel pressured into having sex just because others are. It is important to feel that you are ready before you start having sex. ―Do not feel pressured into having sex just because others are. ―Some people believe that you should not start having sex (be abstinent) until you are married. People also have different views about having sex in marriage; some think you should only have sex if you want to have a baby, whilst others think that once you are married, it‘s ok to use birth control if you still don‘t want a baby. Many religious beliefs object abortion. A lot of people; on the other hand, don't think that there's anything wrong with having sexual intercourse when you don‘t want a baby, and many do not believe that you have to be married, or even in a serious relationship, before you start having sex. It is good to think about where you stand on this issue. As much as abstinence is the right route for some people, a lot of teens do not want to wait to have sex until they are ready to have a baby. Puberty brings with it a lot of sexual feelings, and many choose to have sex for the first time during their teenage years. If you do choose to have sex (and you should only have sex when you're sure that you are ready), make sure that you use contraception. There are a lot of contraception options, and you should choose one that suits you and your relationship. Some women and girls don‘t want to have a baby, but become pregnant because they‘ve had sex without using contraception, or because the contraception that they‘ve used has failed for some reason. In these situations, women may decide to have an abortion. This is where a woman becomes pregnant, but the embryo or foetus (unborn baby) is removed, stopping pregnancy. 135 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives As with birth control in general, there are many different arguments about whether abortion is right or wrong, and whether it should be allowed. If you have sex, you need to consider how you feel about this issue, and how your life would be affected if you had to make such a decision. It is important not to confuse arguments about whether abortion is right or wrong with facts about the medical procedure. Different countries have different laws about abortion, and in many countries it is illegal. In many places where abortion is legal, it is a safer medical procedure than childbirth, and having a safe abortion does not affect your future ability to have children. Where abortion is illegal and not performed in a medical setting, it can be very dangerous. Teenagers and Contraceptives Contraceptives work by preventing a man‘s sperm from fertilizing a woman‘s egg, and this can be done in several different ways. There are two main types of contraception: Barrier methods - which physically prevent sperm from swimming into the uterus and fertilizing the woman‘s egg Hormonal methods - which alter a woman‘s hormonal cycle to prevent fertilization. These are the main types of contraception that are generally used by teenagers. Other types of contraception, which are generally not used by young people, include natural methods such as only having sex at certain times of the month (these are often not effective enough to prevent pregnancy), and sterilization, which is a permanent surgical procedure. The intrauterine device (IUD) and intrauterine system (IUS), also known as 'the coil', are generally not used by young people although in some countries, they are now considered suitable for all age groups. Different methods of contraception have their individual advantages and disadvantages. There is no single ‗best‘ method of contraception, so you have to decide which is most suitable for you. Whatever your situation, there should be a contraception option that works for you. For many people, barrier methods of contraception are best, because they not only prevent pregnancy, but also prevent HIV and other STI‘s from being passed on during sex. It depends which type of contraceptive you are looking for. Barrier methods such as condoms and spermicides are widely available from drug stores and other shops in many countries. They are also available from many healthcare providers. Hormonal methods are only available on prescription from doctors. There are three main barrier methods of contraception used by teens: the male condom, the female condom, and spermicides in the form of foams or gels. The male condom is the only method of contraception that boys can use. It is really just a rubber tube. It is closed at one end like the finger of a glove so that when a boy puts it over his penis it stops the sperm going inside a girl's body. An advantage of using male condoms is that a boy can take an active part in using contraception – it is not just the girl's responsibility. The female condom is not as widely available as the male condom and it is more expensive. It is however very useful when the man either will not, or cannot, use a male condom. It is like a male condom, except it‘s bigger and worn inside the vagina. It is a good idea to practice with condoms before having sex. You can get used to touching them, and it might help you feel more confident about using them when you do have sex. Spermicides are chemical agents that both kill sperm and stop sperm from travelling up into the cervix (the lower part of the uterus, or womb, where babies develop). Spermicides come in different forms including creams, foaming tablets, gels and foam (which is squirted into the vagina using an applicator). Young people who use spermicide mostly choose foam. Spermicides are not very effective against pregnancy when used on their own, but are very effective if used at the same times as a male condom. When used 136 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives together, the male condom and spermicide can be a great combination for effectively protecting against both pregnancy and sexually transmitted diseases such as HIV. Some condoms also come lubricated with spermicide (Nonoxynol 9). A spermicidal lubricant aims to provide an additional level of protection if some semen happens to leak out of the condom. This can help to reduce the likelihood of pregnancy, but regular use of Nonoxynol 9 can cause an allergic reaction in some people resulting in little sores that can actually make the transmission of HIV and other sexually transmitted infections more likely. Nonoxynol 9 is only a suitable spermicide when both partners are HIV-negative. It should only be used for vaginal sex. There are two main types of hormonal contraceptive which can be used by teens: the contraceptive pill, and the injectable hormonal contraceptive. If used properly, both are extremely effective in providing protection against pregnancy – but they provide no protection at all against sexually transmitted diseases. For very good protection against both pregnancy and sexually transmitted diseases like HIV, a hormonal method should be used at the same time as the male condom. People often talk about being 'on the pill'. This means they are using the oral contraceptive pill as a method of contraception. This has nothing to do with oral sex, and just means that the contraceptive is in pill form which is taken orally (swallowed). The pill contains chemicals called hormones. One type of pill called ‗the combined pill‘ has two hormones called Oestrogen and Progestogen. The combined pill stops the release of an egg every month – but doesn't stop periods. The other type of pill only has Progestogen in it. It works by altering the mucous lining of the vagina to make it thicker. The sperm cannot then get through, and as the sperm can't meet the egg, the girl can't get pregnant. Usually a girl has to take one pill every day for about three weeks. She then takes a break for seven days while she has her period, before starting the cycle again (or instead, she may take ‗sugar‘ pills for those seven days, i.e. pills that don‘t actually have any affect, but which are taken purely so she keeps in the routine) for seven days. It is very important not to forget to take these pills. If this happens, protection against pregnancy is lost. The Progestogen-only pill also has to be taken at the same time every day. It's a very effective method of contraception if it is taken correctly. If the pill is taken exactly according to the instructions, the chance of pregnancy occurring is practically nil. But if a girl forgets a pill, or is very unwell, its effectiveness is reduced. Another disadvantage of the pill is that it does not provide any protection against STDs. For very good protection against both pregnancy and STDs, the birth control pill should be used at the same time as the male condom. Injectable Hormonal Contraceptive The most popular form of this type of contraception, Depo-Provera, involves the girl having an injection once every twelve weeks. The injection is of the hormone Progestogen. The injection works in the same way in the body as the Progestogen only pill, but has the advantage that you do not have to remember to take a pill every day. It does however have the same disadvantage as the hormonal pill, in that it provides no protection against STDs. The Contraceptive Implant The 'implant' is a newer form of contraceptive, It is a small tube, a little over an inch long, which is inserted under the skin on the inside of a girl's arm. The implant works in a similar way to the contraceptive pill, but instead of taking a pill every day, hormones are steadily released into a girl's body from the device. This is seen as an advantage, particularly for girls who have trouble remembering or don't like having to take a pill every day. However, the implant can cause 137 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives unwanted side effects, and like the other hormonal contraceptives, the implant does not protect against STDs. The morning after pill If a girl has had unprotected sex, but doesn‘t want to have a baby, one option is ‗the morning after pill‘ – an emergency contraceptive that can prevent pregnancy, when taken after sex. The name is actually a little bit misleading, as it doesn‘t necessarily have to be taken ‗the morning after‘ – it can work up to 72 hours after you‘ve had sex. However, it is most effective when taken within 24 hours of sex, and the sooner you take it, the better. Although the morning after pill can be an effective way to avoid pregnancy if you have had unprotected sex, you shouldn‘t rely on it, or use it regularly. It is not as effective as other methods of contraception, and can have side effects. What is more, it won‘t protect you from HIV or other sexually transmitted diseases. STD’s & young people STD stands for Sexually Transmitted Disease (sometimes called Sexually Transmitted Infection). This is an infection which can be caught by having sexual contact with someone who is infected. This can be vaginal, oral or anal sex, although other types of touching can pass some STDs - for example, some STDs (such as Herpes and HPV) can be caught by touching the infected areas of someone's body and then touching your own genitals (private parts). There are quite a lot of different STDs. Knowing as much as possible about them is one of the best ways to keep yourself sexually healthy. In fact, some STDs like chlamydia and gonorrhea are actually more common among young people than among older men and women. And you do not have to have sex with a lot of people to get an STD, although this can increase the likelihood. You wouldn‘t necessarily. Sometimes STDs have no symptoms at all. Visible STD symptoms can be found either on the genitals or in and around the mouth. If you think you have an STD you should have a test and get treatment. Many STDs are easy to cure and all are treatable. However, untreated STDs can be dangerous if you don't get help, you may not be able to have children later in life, or it can increase your risk of cancer. You may also pass it on to your partner. It may help you to talk to an adult perhaps a parent, school nurse or teacher may be able to advise you where you can have an STD test. Or you can ask your doctor about STD testing. It's much better to talk to someone than to worry on your own. Most (but not all) clinics have a confidentiality policy, and will not tell anyone, although some places will want you to bring a parent to give consent. You can phone the clinic before you go and find out. If you think that you may already have passed on the infection to someone else, it is important that you tell them so that they can have a test, too. They may take a urine sample, a blood sample or a swab from the vagina or penis. Not all STD testing requires you to have a physical examination, and you might not even have to undress. Ask what they are testing for - it may be a good idea to be tested for everything, if you can. Some places can give you the results on the same day, in other places you may have to wait for a week or more. While you wait, you shouldn't have sexual contact with anyone. If you find that you do have an STD, it is important that you do not pass on the infection to anyone else. Ask the clinician for advice about when it‘s safe to have sexual contact again. If you think that you may already have passed on the infection to someone else, it is important that you tell them so that they can have a test, too. If the clinic gives you antibiotics or medication, make sure that you 138 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives follow the instructions and complete the course of treatment - otherwise the STD may come back. Using condoms during vaginal, oral and anal sex will help to protect you. You could also use a female condom (although you shouldn't use both male and female condoms together). However, some STDs (such as oral herpes) can be transmitted in other ways, such as kissing. You shouldn't have sexual contact with anyone who has visible sores or genital rashes. You can only catch an STD by having sexual contact with someone else who already has an STD, but remember that this won‘t usually be obvious. This means that someone who does not have an STD cannot infect you, and you cannot infect yourself by masturbation. Young people & HIV To be able to protect yourself, you need to know the facts, and know how to avoid becoming infected. You also need to know how to challenge the major myths and misconceptions around HIV and AIDS because they can lead to young people who live with HIV being stigmatized. HIV is passed on in the sexual fluids or blood of an HIV-positive person, so if infected blood or sexual fluid gets into your body, you can become infected. This usually happens by either having sexual intercourse with an HIV-positive person without using a condom or by sharing needles used to inject drugs with an HIV-positive person. People can also be born with HIV if their mother has HIV or get HIV through breastfeeding.A very small number of people get HIV by having medical treatment using infected blood transfusions. HIV cannot be caught by kissing, hugging or shaking hands with a person living with HIV, and it cannot be transmitted by sneezes, door handles or dirty glasses. Lots of sexual activities are completely safe. You can kiss, cuddle, massage and rub each other's bodies. Nothing you do on your own can cause you to get HIV - you cannot get HIV by masturbating. Using a condom is not absolutely safe as condoms can break, but condoms can be very effective if they are used correctly. Oral sex (one person kissing, licking or sucking the sexual areas of another person) does carry a small risk of infection. If a person sucks the penis of an infected man, for example, infected fluid could get into the mouth. The virus could then get into the blood if you have bleeding gums or tiny sores somewhere in the mouth. The same is true if infected sexual fluids from a woman get into the mouth of her partner. But infection from oral mouth alone seems to be very rare. If you are using drugs you may take risks you normally would not take, and you may have unsafe sex when you would normally be more careful. If you take drugs, you might find it more difficult to use a condom or you might forget altogether. One of the most common drugs this can happen with is alcohol - if you are drunk, you might not always know what you're doing, or you might not care. ―If you are drunk, you might not always know what you're doing, or you might not care. ―If you inject drugs, you should always use a clean needle, syringe and spoon, water, etc. each time you inject, and never share any of these with anyone else. If you snort drugs, and you use a note or a straw to snort through, you should not share it with anyone else, as blood can be passed from the inside of one person's nose to another. If you have a tattoo or a piercing, you should make sure that the needles and equipment used are sterile. Ask the staff at the place you have it done about what precautions they use. If you have sex with a partner who has HIV, you can be infected with it, whether it's your first time or not, so use a condom! If it is the first time you have sex or the first time with a new partner, it can be scary enough without having to worry about condoms. But using condoms can be quite sexy - try getting your partner to unroll it for you. You may find it helpful to talk to an adult - perhaps a parent, school nurse or teacher may be able to advise you where you can have a test. It is much 139 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives better to talk to someone than to worry on your own. The clinic will suggest that you wait three months after your last risky sexual contact before having a test. This is because the virus is difficult to detect immediately after infection. The clinics in different places have different policies. Most (but not all) clinics have a confidentiality policy, and will not tell anyone, although some places will want to bring a parent to give consent. You can phone the clinic before you go to find out. Before they do anything, the doctor or nurse will ask if you are sure you want to have a test. They will usually take a sample of blood for examination. If you also want to be tested for STD‘s, they may take a urine sample, or they might ask if they can take a swab from the vagina or penis. Some places can give you the results on the same day, in other places you may have to wait for a week or more. While you wait, you should not have sexual contact with anyone. Talk to your doctor or the clinician where you got tested. They will give you more advice about how to stay healthy. They will also be able to tell you if you need to have any other blood tests done, and talk to you about medication. Puberty and sexual organs It is good to get really well-informed about bodies, both your own and others. This can help you to be sexually healthy and confident. Not everyone fits simply into one of the categories ‗girl‘ or ‗boy‘, and there is help out there for young people who think they may be ‗transgender‘ where they have a girl‘s body but feel like a boy, or the other way around. Between the ages of 10 and 14 most boys and girls begin to notice changes taking place in their bodies. These changes, which occur over a number of years, are generally referred to as puberty. The changes take place in all boys and girls but they will start at different times and take place at different rates. Not everyone starts puberty between the ages of 10 and 14, some people start younger, and some much later. Similarly, in some people all the changes take place in two years, and in others they can take as long as four years. Generally they start between ages 7 and 13 in girls and ages 9 and 15 in boys. Puberty starts when extra amounts of chemicals called hormones start to be produced in the body. These hormones guide the changes that take place in the body. As well as causing physical changes, these hormones also cause emotional changes. One of the main physical changes of puberty is the growth and development of the sex organs – the parts of the body that are used to have sex and make babies. Sex organs that can be seen on the outside of the body are called ‗genitals‘ while those that are inside the body are usually called ‗reproductive organs‘. Between a girl‘s legs there are three small openings. At the front is the urethral opening which a girl urinates through, and at the back is the anus which she defecates from. In between these two openings is a third, her vaginal opening. From the vaginal opening there is a small passageway or tube, called the vagina, which leads to the reproductive organs inside the body. When a girl has her period the blood comes out through her vagina. Inside the vagina there is a small piece of thin skin called the hymen. The hymen partly covers the vaginal opening, but there is still enough of a gap for blood to get through. Sometimes the hymen breaks and bleeds slightly when a girl has sex for the first time. Some other important parts of a girl‘s sex organs are: The clitoris, which is at the front of a girl‘s outside sex organs and is about the size of a pea. The purpose of the clitoris is to give sexual pleasure. It is very sensitive and important for sexual activity. The outer lips (labia) of a girl‘s sex organs 140 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives The labia, clitoris and vaginal opening are together known as the vulva. The boy‘s sex organs outside his body are his penis and testicles (testes). A boy‘s penis hangs down between his legs at the front of his body. The main parts of a penis are: The shaft - the main, long part of the penis The glans - the tip or head of the penis The foreskin - skin which covers the glans The foreskin can usually be pulled back quite easily. If it is tight it can be stretched by gently pulling it over the glans. All boys are born with a foreskin, but some have it removed when they are young, or later in life. The removal of the foreskin is called circumcision. Circumcision happens for religious or cultural reasons, or for health reasons, such as to reduce the likelihood of becoming infected with HIV. Underneath the penis is the scrotum – a loose, wrinkly pouch of skin that hangs down behind a boy‘s penis. It contains his testicles. As a boy goes through his puberty his testicles move lower down his scrotum. One of the testicles usually hangs lower than the other. Inside a girl‘s body are two small organs called the ovaries? Contained in these ovaries are hundreds of tiny sex cells called eggs, each no bigger than the head of a pin. At some point during puberty, the ovaries will begin to release these eggs. Usually one egg is released every month. This process is called ovulation. A boy‘s sex cells are called sperm and they are even smaller than a girl‘s eggs. At puberty a boy's testicles will start making sperm. Sperm leaves a boy's body through his penis when it is hard and erect. This is known as ejaculation and it happens when a boy reaches the height of sexual excitement and has an orgasm. When a boy ejaculates, millions of tiny sperm are sent from his testes, up through his penis and out through the end. The sperm are contained in a sticky white fluid called semen. When a boy‘s sperm meets with a girl‘s egg they usually join together, which is called fertilization. The fertilized egg may then become a fetus, the first stage in the growth of a baby. The most common way that sperm get inside a girl‘s body is through sexual intercourse. Sexual intercourse is when a boy puts his hard penis inside a girl's vagina. It is also often called having sex or making love. Having sex (which usually involves moving the penis in and out of the vagina) is usually pleasurable for both a boy and a girl, and it will often result in an orgasm for one or both partners. If a boy ejaculates while his penis is inside the girl‘s vagina (or if semen gets inside the vagina any other way) then the millions of tiny sperm in the semen will swim up the vagina, through the cervix (the entrance to the uterus) and into the uterus (also known as the womb). From there they will swim into the fallopian tubes. In one of the fallopian tubes the sperm may find an egg that has recently been released by the ovary. The sperm will surround this egg and try to get inside it. Eventually just one sperm cell will succeed, and the egg and sperm will join. This joining is also known as fertilization or conception. This joined sperm and egg then travel back down to the uterus, where they will settle in the thick, blood-rich lining and start to grow. Once the fertilized egg has settled in the uterus and is growing, we say a girl is pregnant. On average, the whole menstrual cycle (from the first day of the period to the day before the next) will last 28 days. Girls generally only release an egg once a month and it will normally take a few days to travel down the fallopian tube. If the sperm and the egg do not meet to become a fertilized egg during this time, then she won‘t become pregnant. Without a fertilized egg to nourish, the thick lining of the uterus is no longer needed. So, approximately 14 days after a girl‘s egg is released, the bloody lining of the uterus will begin to come away, and will flow down through the cervix and out of the vagina. This process is called menstruation, and this is the blood that a girl will notice 141 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives when she has her period. During puberty, a girl‘s first period is a sign that she has released her very first egg, and could now have children. Periods will usually last somewhere between 3 and 10 days. Around 14 days after the start of her last period, a girl will ovulate (release an egg) again, and will once again have the chance to become pregnant. This process of period, then ovulation, then period, is known as the menstrual cycle. On average, the whole menstrual cycle (from the first day of the period to the day before the next) will last 28 days, although variations between 21 and 35 days are quite normal. Though an egg is usually released about the same time each month, this does not mean that a girl can predict exactly when she will (or won‘t) become pregnant. This is because girls usually have no way of knowing exactly when they are ovulating. Not only can the day of ovulation vary from girl to girl, it can vary from month to month in an individual girl. In addition, sperm can survive for several days within the body, so they can ‗hang around‘ waiting for an egg to be released if there isn‘t one there already. All this means that if a girl wants to avoid pregnancy but still have sex, she and her partner will need to use contraception.STD‘s, which can be passed on from one person to another during sexual intercourse, are also something that both boys and girls need to consider if they decide to have sex. Condoms are widely used because they help to prevent both pregnancy and sexually transmitted diseases. Using contraception every time you have sex is very important if you want to avoid pregnancy. It is also important to remember that a girl can become pregnant even if: It is the first time she has sexual intercourse She has sex before she has her first period (it could be that she is ovulating for the first time) She has sex during her period (sperm can stay alive for several days) A boy withdraws his penis before he ejaculates (pre-come, the fluid that leaks out the penis before a boy ejaculates, can sometimes contain sperm) She has sex standing up (sperm can swim in any direction – up or down!) Because periods stop during pregnancy, the first sign that a girl may be pregnant is usually a missing period. If a girl does not start her period at the usual time, it is probably a good idea for her to talk to her doctor or another adult as soon as she can. Periods can come late for other reasons (for example when a girl is stressed, on a very strict diet or has been unwell), but if she has had sex in the past month, then it may be a good idea to take a pregnancy test to be sure. When boys get sexually excited, the main sign is that they get an erection. For boys and girls when they are sexually excited or "turned on", extra blood comes to the surface of the skin, particularly around the penis and vagina. This can cause areas of the body to feel more sensitive, and some people find they get a warm sensation. A person can have sexual feelings any time in their life, but these change around puberty. You might find some sexual feelings just seem to happen to you. But sexual feelings mostly come about from things you choose to do, either on your own or with someone else. The main way that people express their sexual feelings is by touching their own genitals. Boys can get pleasure from touching their penis, particularly the tip. This is called masturbation. Some people masturbate very often, maybe every day. Some people do it less often, and some do not masturbate at all. When a person is masturbating they become more and more sexually excited. They may then reach a peak of sexual excitement which is called having an orgasm or "coming". This is when all the tension and excitement that has built up is suddenly released. Boys ejaculate when they have an orgasm and their penis will then go limp. Everybody has their own way of masturbating that feels good for them. For much masturbation is their first sexual experience. There are many myths about masturbation which make some people think it is wrong. However, 142 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives masturbation is a normal and natural activity and is not bad for you unless you masturbate so much that you make your genital area sore. Masturbation does not damage your health: it cannot cause cancer, give you a sexually transmitted infection, affect your eyesight, or make you go mad. It does not cause hair to grow on your palms or any other part of your body, and it does not stunt your growth. If it did, the vast majority of people in the world would be very short and unhealthy! People have strong views on it, but pornography is one way that some young people explore their sexual feelings. In some settings, many boys search for answers to their questions about sex and the body through watching porn. As an infant, you may be newly diagnosed and wanting to find out more about life with HIV, you may have lived with HIV all your life or you may have just found out about your status and want to know more about what it means. It may be that you have always known that you have a health condition, and now your family has told you more about it. It may be that you have recently become infected with HIV and have just been diagnosed. Either way, finding out that you have HIV is emotionally very difficult, and something that you will need support with. This support can come from family, friends or professionals like doctors. It can also come from the internet - you can connect with other people through sharing stories and experiences. What you need to remember is that there are over a million other young people in the world who live with HIV – you are not alone. It is a condition that affects your immune system, not who you are – HIV does not have to stop living your life to the full! When you are young, there is going to be a lot of stuff going on in your life – school, friends, weekends, your family – some of it great, some of it difficult. Whilst most of issues that you face may be the same as many of your friends, HIV can add some extra things that you need support with. Telling people that you have HIV is known as ‗disclosing‘. It can be a big decision to share your status with a friend. It can bring you closer and create another source of support, but it is good to consider what could go wrong and to be very clear about how you will tell the person. If you decide that this is something you want to do, you can make a personal plan – when will you tell them? Where is a good place to be? How much do they already know about HIV? You could get them to read 'HIV and AIDS for young people' so they know the facts. How much do you want to tell them? Only that you have a blood condition, or do you want to name it? Asking questions like ‗What do you think about HIV?‘ beforehand may help you to gauge how much they know and how they may react. When disclosing, remind your friend that this is just something that affects your immune system – it does not change who you are or your friendship. You may decide that you do not want to tell anyone at your school, but to share your status with people from a peer support group, where people will be in a better position to understand. These days, many young people feel that they are part of a generation where HIV is NORMAL, but others still feel isolated and unable to talk to anyone about their status. One of the reasons for this is that unfortunately, HIV is sometimes connected with something called ‗stigma‘. This is when people think that somebody is less valuable because of a certain thing about them, like where they live, what language they speak, what colour hair they have or their HIV status. It is very wrong, but is usually because people do not understand the thing that they are passing judgement about. In the case of HIV-related stigma, if you experience it, it is really good to talk to somebody – to try to work out a way to challenge it together. Becoming an HIV/AIDS advocate Problems with stigma sometimes are not helped by information about HIV not taking into account the views and experiences of HIV-positive people: Getting involved in advocacy 143 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives activities, which is about getting your voice heard as a young person living with HIV, can help you to challenge stigma with other people who may have been through similar experiences. Sharing your story or posting about how HIV affects you on Face book, twitter, LinkedIn inter alia can link you to other people who understand that the issues that you discuss are important. HIV is now considered to be a 'long-term chronic condition'. This is something that affects your health over a long time. Many HIV-positive people have a long life expectancy. With this in mind, it is really important to keep thinking about your long-term goals, whether you are looking to join a university, travelling, making new friends, getting an amazing job, seeing yourself married, shifting where you grew up, or living somewhere else, or having children? (This IS possible without passing HIV to your children or your partner). It is good to chat to your healthcare worker about what is most important to YOU about YOUR FUTURE so that he or she can help you to make sure that HIV does not hold you back! Living with HIV can be challenging, but it does not have to take over your life. It is a good idea to identify the people that you know you can go to for support – for some that is family, for others it could be a youth worker, somebody from your religious or faith community, a friend or a teacher. For many young people, your health worker or doctor is the main source of support. Ask your healthcare provider – they may know of things like this in your country or area. A good way to start feeling connected to people going through similar things to you is by reading about the experiences of other HIV-positive young people. The really important thing is to make sure that you feel able to take your medication properly. If you find this really hard, you are not alone – and sometimes healthcare staff can make things worse by making you feel rubbish for ‗doing badly‘ with your medication. Many HIV-positive young people do not experience problems with taking medication – they find it easy to remember, they feel no side-effects and they have no trouble working out how to fit taking their medication into their daily routine. Other people have found it difficult because: They experience side-effects like nausea They find that pills are difficult to swallow/medicines can taste horrible! They find that practical things like carrying medication, or water to swallow them, can be hard to remember. It is your healthcare provider‘s job to help you to do this. Try to explain any difficulties you have faced with your medicine – even if it is something like staying over at a friend‘s house and taking the medication without them seeing - they may be able to give you some good advice. When you first start taking your medication it can be good to practice with swallowing sweets. It can be difficult to look into the future and think beyond today – but focusing on your long-term goals can help you to feel positive about taking your medication – remember that you have got LOADS of potential. If you have trouble remembering to take your medication, it is a good idea to ask a friend, family member or boyfriend/girlfriend to help you to remember. Some young people find that the healthcare staffs they get seen by are always different, and this makes it harder to build a positive relationship with them. See if you can request to see a particular person that you like. Try to find a service you feel that the people there truly respect you. Ask at your health center if there is a way of giving your health worker feedback on how well they communicate with you! When you grow up with HIV, it can be really hard to change from child health-services to adult-services. You may have had a nurse that you have known for a long time and are close to. Sometimes the added responsibility of taking care of your own medication can be hard. You may want to ask for extra support at this time, particularly with remembering to 144 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives take your medication or coping with the general stresses of life. Try to find out how other people have coped with this, if you are at a peer support group get advice from others. Never give up on your medication! Relationships and HIV-positive Young People Many young people consider whether they would like to be in a relationship, and if so, what makes a good relationship? Living with HIV does NOT mean that you cannot be in a relationship. If somebody is unable to look beyond your status, they are not a great person to get close to anyway. Whilst everyone has the right to choose who they have sex with, nobody has the right to make you feel bad because of your HIV status. Sometimes you may feel that you are with someone and it is not right. It can be hard to end something that is not right, especially if you have strong feelings for a person, or if they are supportive of your HIV status. If you rely a lot on your boyfriend or girlfriend for support, make sure that you seek out support from another close friend if a relationship ends. Deciding to tell your partner can involve a lot of the same considerations as telling a friend. However, if you are thinking of having sex with a boyfriend/girlfriend, you will need to think about what to tell them, and how to ensure that you do not transmit HIV. It can be a good idea to tell them in advance, just in case a condom splits or something happens where HIV could be transmitted. The difficulty is finding a way to tell them where they will understand the risk, but do not panic or react badly! Lots of people are happy to be with somebody who is HIV-positive, but sometimes disclosing your status can lead to regrets… remember that people who react in a way that makes you feel bad are not necessarily worth your time. If you have a friend who knows your status, it can be a good idea to plan this process with them and meet up with them afterwards to chat about how it went.Condoms are GREAT because they stop HIV being passed on from one person to another. If you want to have sex, or oral sex, you need to know how to use a condom so as not to transmit HIV. Also, people living with HIV can be at more risk of catching some STIs, so it is extra important that you use a condom for your own sexual health as well. Even if your partner also has HIV, you will still need to use a condom to ensure that you and your partner don‘t get infected with HIV again, which can cause problems with your treatment. HIV is more likely to get passed on if you have what‘s called ‗a high viral load‘. This is when you have a lot of HIV in your body. If you are on HIV treatment, this can make your viral load lower, which lowers the risk of passing on HIV. If something goes wrong with your condom – it splits or you forget to use one – there is something that your HIV-negative partner can take to help prevent them from getting HIV, but they will need to ACT FAST. Many young people who are HIV-positive find that sex is more enjoyable if their partner knows their status – it helps you to communicate well if you are open with each other and means that both people can share the responsibility of safer sex more equally. Many countries have laws that affect people living with HIV who have sex. Sometimes young people who live with HIV mistakenly believe that it is completely illegal for them to have sex. However, laws are more likely to be about using protection or informing your partner about your status. Make sure you know the law in your country. Some of these laws are based on ignorance, and can actually increase stigma rather than protecting people. If you feel strongly about this, it is a good idea to get involved in advocacy activities. You may want to use other types of birth control to further lower the risk of pregnancy, in case your condom splits. However, some types 145 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives of birth control like the pill do not work with HIV medication, so speak to a health worker about the best option for you. Age of consent There are some important laws regarding sex and young people, and these are usually known as the age of consent laws. The age of consent is the age at which a young person is legally able to understand and agree to consensual sex. In most countries, until you reach this age it is illegal for somebody to have sex with you, however old they may be. Sometimes the law is slightly different when the partners are of a similar age, but there is usually still a minimum age below which sex is always illegal. There is no international age of consent and the age when a person is legally able to consent to sex depends on a country's age of consent laws. Age of consent laws are usually complex and, in many countries, the legal age to consent to sex is different depending on certain conditions. These include, but are not limited to: Male or female Anal sex Vaginal sex Partner age difference A partner that represents a position of authority Existing state, territory and federal laws If partners are married or unmarried Being aware of global variations in the age of consent is important to avoid breaking the law in countries that have laws different to your country of residence. Follow the individual links below for information on the age of consent by country and any specific conditions that modify the age of consent. Although some young people may feel that they are mature enough to engage in a sexual relationship, others may lack the emotional development to deal with this or to feel confident enough to say 'no'. Age of consent laws are there to protect young people from being sexually exploited by adults. Sex before the age of 15 years and among partners where there is a large age difference may increase the risk of HIV transmission. If you are a young person, and you want to find out more, read our page on teens, sex and the law. You might also like to have a look at our "Am I ready for sex?" Girls and young women who have relationships with men much older than themselves are said to have a 'sugar daddy', also called a 'silver daddy'. Boys and young men also have relationships with older women - known as a 'sugar mummy' or 'sugar mamas'. Sugar daddies and sugar mummies are much older than their partners, providing them with money and gifts in exchange for company and sexual favours. Young men and women often leave education early, with the belief that their needs will be met by their older partner. This is common phenomenon in many countries, and where HIV prevalence is high, sex with a sugar daddy or sugar mummy contributes to new HIV infections amongst young people. You should always use a condom when having sex. Although it can be difficult to insist on using a condom, especially if your partner gives you money and gifts, you risk becoming infected with HIV plus other STI‘s if condoms are not used all the time. Statutory rape is the crime that someone can be charged with if they have sex with a person who has not reached the age of consent, but who agrees to have sex. Some countries have different names for this. Some countries example calls it 'unlawful sexual penetration' or just 'rape'. Sexual abuse is the term for an adult using their age or authority over a young person to have any type of sexual contact. There is a difference between this and two young people who are in a consenting 146 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives relationship. If you are a young person involved in an abusive relationship it is important to talk to someone about this. 147 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives ANTIRETROVIRAL DRUG TREATMENT This is the main type of treatment for HIV/AIDS. It is not a cure, but it can stop people from becoming ill for many years. The treatment consists of drugs that have to be taken every day for the rest of life. The aim of antiretroviral treatment is to keep the amount of HIV in the body at a low level. This stops any weakening of the immune system and allows it to recover from any damage that HIV might have caused already. These drugs are often referred to as: antiretroviral (ARVs), anti-HIV or anti-AIDS drugs. Taking two or more antiretroviral drugs at a time is called combination therapy. Taking a combination of three or more anti-HIV drugs is sometimes referred to as Highly Active Antiretroviral Therapy (HAART). If only one drug was taken, HIV would quickly become resistant to it and the drug would stop working. Taking two or more antiretroviral at the same time vastly reduces the rate at which resistance would develop, making treatment more effective in the long term. At the beginning of treatment, the combination of drugs that a person is given is called first line therapy. If after a while HIV becomes resistant to this combination, or if side effects are particularly bad, then a change to second line therapy is usually recommended. Alternative and complementary medicine is quite popular among people living with HIV. Many HIV positive people say they feel better after using alternative and complementary medicine, and it is likely that some of these treatments are indeed beneficial, although unproven medically.Alternative and complementary medicine is the name generally given to those medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine. Well known examples include herbal and other nutritional supplements, acupuncture, aromatherapy, homeopathy and yoga. Alternative medicine is used in place of conventional medicine Complementary medicine is used together with conventional medicine. In relation to HIV, alternative therapies are most commonly used in areas where it is difficult to access conventional medicine. In the absence of antiretroviral treatment, you may seek other ways to delay the onset of AIDS, or to treat opportunistic infections. Traditional healers also usually provide immediate treatment, whereas clinics may have lengthy waiting lists and tests for eligibility. Most people living with HIV have ready access to antiretroviral therapy and conventional treatments for opportunistic infections. Because these treatments are so effective, there is less demand for alternative HIV medicine, except perhaps for addressing relatively minor infections, or when antiretroviral treatment cannot any longer be taken, for example because of drug resistance. Many instead look to complementary medicine as a way to prevent or relieve AIDS treatment side effects, some of which are not easily treatable with conventional medicine. The effect of alternative and complementary therapies on HIV/AIDS Conventional medicine embraces all approaches shown to be safe and effective in rigorous scientific trials. By definition, complementary and alternative medicine consists of therapies that are unproven, at least by the standards of Conventional medicine. Given the many therapies in existence, there can be little doubt that some of them do what they are supposed to. Many others are likely to be ineffective or can even be harmful. In the absence of good scientific trials, it is impossible to be certain of which is which. From a scientific point of view, some treatments are more likely to work than others. Acupuncture, for example, appears to alter brain activity, and there is quite good evidence that it can help relieve post-operative nausea. Herbal medicines, too, are scientifically plausible: a number of modern drugs are derived from plants first used traditionally. Initially, scientists identified one plant extract that acts like an antiretroviral drug; it 148 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives is entirely possible that there are others. There are a number of reasons why complementary and alternative therapies are delayed from being subjected to go thorough testing. For one thing, major medical trials are highly expensive; if there is no prospect of a patent then there is less of an incentive to invest in research. Reliable, ethical trials also require a considerable amount of expertise. Many scientists with the necessary skills are reluctant to investigate therapies they think are implausible. Although practitioners of complementary and alternative medicine generally voice support for scientific research, they are often unwilling to accept negative findings. At the other end of the scale are therapies that are not considered credible by the scientific community at large. The most notorious of these is homeopathy. Yet even if a medicine has no specific effects on an illness, this doesn‘t necessarily mean it is worse than nothing. It is widely accepted that patients‘ beliefs about a treatment, and the quality of the doctor-patient relationship, can influence health outcomes. This is what is known as the placebo effect. ―Is it possible that the alternative medical community has tended historically to understand something important about the experience of illness and the ritual of doctor-patient interactions that the rest of medicine might do well to hear? … The meanings and expectations created by the interactions of doctors and patients matter physically, not just subjectively.‖ Even if it fails to ease symptoms, the treatment experience may have non-specific effects such as boosting selfconfidence and relieving anxiety. Group therapies – such as yoga – are particularly good for meeting new people, who may be able to share knowledge of other treatment options. Some forms of complementary and alternative medicine can cause harmful side effects. Words like ―natural‖ and ―traditional‖ are certainly no guarantee of safety. Herbal or nutritional therapies may also interact with other medications, making them less effective or worsening their side effects. Even if a therapy carries little risk of direct physical harm, it may still turn out to be a waste of time and money. Relying on alternative medicine instead of scientifically proven treatment can have very serious consequences. Once HIV has severely weakened the immune system, antiretroviral drugs are less likely to be life-saving. HIV positive people have a long history of taking control of their own healthcare decision-making. Those interested in complementary medicine can take steps to maximize their chances of success. There are ten questions for assessing a new therapy: What am I hoping to get out of this therapy? Do other HIV positive people use it? Am I able to talk to any of these other people about their experiences? Is there any research or additional information about this therapy? What are the side effects, if any? What sort of commitment do I have to make to use this treatment? Where can I get this treatment, and will it be regularly available? How much of this treatment is too much and what are the early signs of taking too much? Does this treatment interact with anything else I‘m taking? How much does it cost? Careful research is needed to answer these questions. Good sources of information include reference books on complementary medicine (available in many libraries), medical journals, and the publications of reputable health organizations. As already noted, all forms of complementary medicine are unproven according to Western conventional medicine; each individual must make their own assessment of likely risks and benefits based on the available data. 149 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives The most reliable evidence comes from large human trials – preferably randomized trials in which the treatment is compared to a placebo. Personal testimonies and laboratory findings should be given less weight, especially if they appear only in promotional material. Anyone who makes sensational claims (such as being able to cure many unrelated diseases with a single therapy), or who attacks conventional treatment, is probably best avoided. If you have done your research and wish to try a complementary therapy, the next step is to talk to your personal doctor or HIV specialist. This is important because there may be a risk of interactions with other medications. Some medical doctors are trained in complementary medicine. If your doctor lacks such expertise then it may be sensible to also find a complementary practitioner, ideally one with experience in treating people with HIV. Help finding a practitioner may be obtained from your doctor, the AIDS service organizations. There are many practitioners available; it is worth taking the time to find one you trust and feel comfortable with. Look for experience, qualifications and references you can verify. When purchasing herbal medicine or nutritional supplement, try to choose a reputable seller and manufacturer. Large, long-established companies are generally the most trustworthy because they have more to lose from selling poor quality goods. If possible, look for a company that submits its products for independent quality testing. Having started a new treatment, it is a good idea to keep a diary of your symptoms. This helps to assess whether the therapy is having the desired outcome, or whether it may be causing unwanted side effects. Starting, monitoring & switching HIV treatment Treatment of HIV is a balance of attitude and action. Learning how therapies work, possible side effects and figuring out if you are ready can help when talking with your doctor. Until you need medication, eating well, getting lots of rest and reducing stress go a long way. If you use drugs, making it safer will help you stay healthy. There is no cure for AIDS, but there are a number of different drugs that slow its progress. These drugs are called antiretroviral (shortened to ART). ART can improve the quality and length of your life as well. Deciding when to start treatment depends on the stage of HIV infection which is determined through clinical tests. Once it is decided you should start treatment, a variety of factors must be considered when choosing the right combination of drugs to use. When starting treatment, the effectiveness of your treatment must be monitored so that if necessary, the treatment regimen can be switched. In order to decide whether or not to start treatment, the clinical tests that need to be carried out will determine the stage of HIV infection and your readiness for drug treatment, which may depend on a variety of factors such as your medical history. Once you are initiated on HIV treatment, it is essential that you adhere to your treatment. You will need to be monitored by a doctor to make sure that the treatment is working for you. The term adherence means taking drugs exactly as described. This includes taking all your medication at the right time and exactly as the directions state. It also means ensuring that there will be no interactions with other drugs being taken. Anything below 95 percent adherence may increase viral load and drug resistance. Therefore adherence to antiretroviral treatment is extremely important. This means missing no more than one dose a month, if taking antiretroviral drug treatment once a day. Viral load monitoring Viral load refers to the amount of HIV in the blood. If the viral load is high, T-helper cells tend to be destroyed more quickly. Therefore, the aim of antiretroviral treatment is to keep the viral load as low as possible. In places where it is available, a viral load test is carried out shortly after 150 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives antiretroviral treatment is started. With effective treatment, the viral load drops to undetectable level – below 50 copies/ml. Mostly this happens within 24 weeks of starting treatment, but for some people, it can take up to 3-6 months. On the other hand, some people never reach undetectable level. Viral load tests are then carried out every few months. As some viral load tests produce slightly different results on the same sample of blood, the results are monitored over a period of time. Some side effects occur when the drugs affect the body in ways other than those intended. Most of the antiretroviral drugs have known side effects, but this does not mean that everyone who takes the drugs will experience them. You may only experience mild side effects and find yourself easily manageable. But for some people the side effects occur so strongly that they have to consider alternative drugs. Immune Reconstitution Inflammatory Syndrome (IRIS) IRIS is an illness that occurs for a small number of patients soon after treatment is started. It is caused by an excessive response by the recovering immune system to opportunistic infections that were already present, but were previously dormant and not producing symptoms. Although the symptoms of IRIS are often mild, occasionally they can be life threatening. Generally those with a severely damaged immune system before starting antiretroviral treatment are more at risk of developing IRIS. IRIS does not indicate that treatment is failing. Usually the best response to IRIS is to continue treatment; the symptoms normally disappear within a few weeks. In cases involving severe opportunistic infections, such as cryptococcal meningitis or tuberculosis, it may be necessary to stop antiretroviral therapy whilst the infection is treated. A change of treatment is needed when drugs fail to slow down the replication of the virus in the body. This can occur as a result of drug resistance, poor adherence, poor drug absorption or a weak combination of drugs. Increased viral load or HIV-related illnesses are signs of treatment failure. If viral load testing is available, change as soon as the viral load starts to rise, although this could mean running out of treatment options more quickly. And also monitor the trend of the viral load before making a decision to change. However, this approach may increase the risk of developing resistance to certain drugs, which can limit future treatment options. Antiretroviral drugs slow the replication of HIV in the body. However the drugs cannot stop the replication completely, so some HIV is able to survive despite ongoing HIV treatment. When HIV replicates it often makes slight mistakes, so each new generation of HIV differs slightly from the one before. These tiny differences in the structure of HIV are called mutations. Some of the mutations occur in the parts of HIV that are targeted by antiretroviral drugs. So although there is some HIV that continues to be attacked by the drugs, there are other strains of HIV that are less likely to be affected. This HIV is called drug resistant HIV, and it is able to replicate while unaffected by the drugs. As soon as drug resistant HIV is introduced in the body, the amount of HIV in the blood rises and the risk of becoming ill increases. Drug resistance is one of the main reasons why antiretroviral treatment fails. If resistance develops, usually the drug regimen needs to be changed. The HIV virus is sloppy when it makes copies of itself. Many new copies of HIV are slightly different from the original (mutations). Some mutations can multiply easily even though you are taking drugs that stop "normal" HIV. This is called "developing resistance" to the drugs. If the virus develops resistance, it will multiply faster and your HIV disease will probably get worse. Sometimes, when HIV becomes resistant to a drug you are taking, it will also be resistant to 151 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives other ARVs -- even if you have not used them yet. This is called "cross-resistance." Many ARVs are at least partly cross-resistant. If the virus develops resistance to a drug, you might not be able to use any other drugs of the same type. To avoid using up treatment options, take all your medications according to instructions. There are certain things that can be done to reduce the risk of developing drug resistant HIV. Ensuring that the drug combination is strong to begin with will lessen the risk of resistance developing. This usually means taking a combination of 3 or 4 drugs. Taking medication exactly as prescribed is a very important part of avoiding resistance. Missing doses or not taking them on time lowers the amount of antiretroviral chemicals in the body, which means the virus, is not properly suppressed. The virus is then able to replicate faster, increasing the chance of it becoming resistant. Regular viral load testing is also important as the results can indicate whether a drug resistant strain of HIV is developing. If the drug combination is working, the viral load should be undetectable. An increasing viral load can be a sign of growing drug resistance. Salvage treatment Salvage therapy is the term often used to describe the treatment for those who are resistant to drugs in the three original drug classes. In this situation it may be difficult to find a drug regimen that suppresses the viral load to undetectable level. Many people start their salvage therapy with a much higher viral load than when they started previous treatments. This puts more pressure on the new combination to work. Each combination used lessens the chance of maintaining a low viral load because of the possibility of developing resistance to the drugs. The choice of new treatment should always depend on what caused the previous one to fail. Although antiretroviral drugs suppress HIV they do not eliminate the risk of HIV transmission completely, even when the viral load is undetectable. Antiretroviral treatment cannot make HIV disappear from the blood completely. Unprotected sex between two HIV positive people is not a risk-free activity; there are many different strains of HIV and it is possible to become infected with a different strain more than once, which can complicate treatment. If taking antiretroviral drugs, you should take as much care to minimize the risk of HIV transmission as you did before starting the treatment. 152 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives THE LINK BETWEEN DRUGS AND HIV Recreational drug use could lead someone to practice risky sex which leads them to becoming HIV positive, or they may use alcohol or drugs to deal with the stress of being HIV positive. People have their own individual reasons for taking recreational drugs. This may be to relax, to get excited, to enhance sexual pleasure or merely as a way of giving in to peer pressure. It is important to remember that - apart from nicotine, alcohol and caffeine - virtually all recreational drugs are harmful to our health. Once inside the body, most drugs go into your blood stream, which takes the drug to your brain. There it triggers different responses, changing heartbeat, blood pressure, liver or kidney function, mood and your vision, hearing or feeling things. Reactions differ from person to person but you may be much more likely to take sexual risks that you would usually avoid. If you are HIV positive and you are on combination therapy, then you already have a constant amount of prescription drugs in your system. Adding recreational drugs to that carries risks - your body is already processing your HIV medication so it cannot process recreational drugs as easily as a person not on HIV medication. As your liver tries to deal with both your HIV drugs and any other drugs you have taken, there can be a buildup of the recreational drugs. Another danger of taking drugs when on HIV medication is you are more likely to forget taking your medication most appropriately – or at all. It is always advisable to check with your HIV doctor. Risky combinations There are possible interactions between recreational drugs (including alcohol) and HIV medication - it is always safest to let your doctor or nurse know about any recreational drugs you use. These can sometimes lead to fatal overdoses, as one drug acts with another to increase its levels in your blood. The risk is greatest when the body (in particular the liver) processes recreational drugs and HIV medication in the same way. The risk of an interaction could be higher when you have just started to take HIV medication. In these first weeks and months the body is getting used to processing them, so adding a recreational drug at this time could have added risks. This is an introduction to the most common interactions well known about, but it is by no means exhaustive. If you are using recreational drugs, it is advisable to tell your HIV doctor who will explain any of the risks to you. Do not be nervous about bringing up the subject, your doctor will be used to talking about recreational drug use with patients and would much rather know about it in case it affects your HIV treatment. Drug use and mental health 153 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives If you are HIV positive, you are more likely to contend with mental health issues at some point in your life than someone without the virus. Mental health' means your overall well-being, such as your emotions and moods, and can often be overlooked when you are busy trying to stay physically healthy. Mental health issues can be further complicated when we add drugs into the mix. For example, if you suffer from anxiety or depression, using recreational drugs puts you at higher risk of these getting worse or developing more serious mental health problems. If you are prone to mental health problems, using drugs can trigger them; but you might not realize you are vulnerable at the time and only discover this when drugs trigger a problem. It is also important to keep in mind that the side-effects of some HIV medication can lead to depression. The heavier and longer your drug use, the more likely you are to have mental health problems which can result in even more dangerous problems, such as forgetting to take your HIV medication or having very risky sex. Serious mental illness like psychosis (i.e. not knowing what is real and what is not) can be the result of heavy use of some drugs. It is worth remembering that alcohol is a depressant, so it makes someone with depression feel worse, especially if they are a long term, heavy drinker. Early diagnosis of a mental health problem is essential to help you get the best treatment and attention - particularly if you are HIV positive and using drugs. Remember that sometimes your best source of help and support could be closer than you think – talk to a trusted friend or family member about what you are experiencing. They can also support you in looking for professional help. Some anti-depressants can interact dangerously with some recreational drugs, boosting levels of the recreational drug in the body to dangerous levels. A potentially life-threatening reaction called Serotonin Syndrome can also occur, where the brain releases too much of its ‗feel good‘ chemical serotonin. Symptoms include a fast heartbeat, sweating, muscle spasms, shivers, high temperature, feeling agitated and being unable to sleep. Urgent medical help is required in this situation. If you are prescribed anti-depressants, check with a doctor about any possible interactions with recreational drugs you may take. The doctor may be able to give you a different type of anti-depressant, one less likely to have a bad reaction. Problematic drug use 'Problematic' drug use is when you become dependent upon a drug and cannot function properly without it, or it starts negatively impacting areas of your personal life such as finances, sex or relationships. It might be time to stop if any of the following apply to you: You use more than you planned and for longer You feel guilty about your drug use You need to take or drink more and more to get the same effect You spend a lot of time looking for and taking drugs You cannot enjoy clubbing or sex without drugs. You stand a better chance of controlling your drug or alcohol use if you first think about what you do and why, and the ups and downs of your drug use. It can be hard to change but there are plenty of places you can get help from. Here are some ten achievable steps to help you move away from problematic drug use: Make a note of when, where and why you take drugs (and who with). Ask friends for help, e.g. not to offer or use drugs or talk about them in front of you. Set yourself small, achievable goals and accept that any change will come one step at a time. Be prepared for withdrawal symptoms (trouble sleeping, irritability, boredom, mood swings) – these will ease over time. 154 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Get rid of drugs and drug-related objects - having them around can act as a trigger to use. If cutting down, put them out of easy reach. Avoid things that trigger your use (states of mind, places, people, objects, types of sex etc.). Stay busy – boredom is your biggest enemy. Overcome it with anything not linked to drugs (exercise, hobbies, shopping, family, friends who do not use drugs). Stay active – exercise (swimming, walking, and gym) gives you a natural high (endorphins), relieves boredom, gives you energy and boosts the immune system. Take care of your body – you need sleep, healthy food and to avoid stimulants like caffeine, cola and energy drinks. Get support – you do not have to do it on your own. Ask at your clinic for a counseling referral or check out the links to the right for more information. It is also worth remembering that, while not illegal, drinking alcohol and smoking to excess can have serious health implications. Being HIV positive means that your body requires extra support. Cutting back – or quitting – smoking or drinking can be a very healthy step. Sleep and HIV A positive status and any HIV medication may affect your sleeping pattern. A good night‘s sleep is essential for physical and mental health and if you are not getting enough it can make you feel pretty bad. There is no magic number for the amount of sleep we need as we are all different, but most adults sleep for an average of seven to nine hours per night. You should listen to your body to find out how much sleep is good for you. If you are not getting enough sleep you will feel slow and tired all day, perhaps moody and you won‘t be able to perform as well at anything that you need to use your brain for. We build up a ‗sleep debt‘ when we do not get enough sleep over a period of time and that this can lead to serious problems when carrying out normal day to day tasks. Insomnia is classified as a difficulty in getting to sleep and/or staying asleep. Alongside fatigue, which you will feel if you often do not get enough sleep, insomnia is common in HIV positive people throughout the course of the virus. If you have always found it difficult to sleep, HIV could exacerbate the problem - so talk about this with your doctor. Depression and anxiety can also affect your ability to sleep. Sleeping problems could also be a side effect of your HIV medication, so it is worth talking to your doctor if you believe that this is the case. If bothered with a poor sleep, always try a few simple things for self-benefit: Is your bed comfortable? Many of us find that it's best if it is not too soft and not too hard Is your bedroom with the right temperature and not too noisy or light? Only go to bed when you are sleepy Avoid caffeine, rich food, smoking, exercise or alcohol just before you go to bed Only use your bed for sleeping and sex: don‘t watch TV or eat in bed. By creating a space you can unwind and relax in, you are more likely to be able to fall asleep naturally in it. Sleeping tablets can be taken a lot but some of them can be addictive and can leave you tired and irritable the next day. They may lose their effect after some time, and should only be used for a few nights at a time. Medications and sleep 155 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives HIV medications are more effective at controlling the virus and can help live a long, fulfilling life. However, some of the drugs may cause side-effects. Adhering to your prescribed regimen is extremely important but some people stop taking them because of the side effects. If you ever think you are at risk of stopping your medication, speak to your doctor as soon as possible, as changing medications could be a solution to the problem. One of the more common side effects with many HIV drugs is problems with sleep. Some drugs can cause dizziness and nausea and so you might decide to take them just before you go to bed. For many people this makes sense but if the drugs begin to interfere with your sleeping pattern then it is worth exploring options to tackle this. Insomnia can mean not being able to get to sleep, having trouble staying asleep or waking up too early in the morning. It is important to address these symptoms, as getting a good night‘s sleep is essential to long-term health as an HIV positive person. The amount of sleep that we need is unique – each of us is different, so just try to get as much sleep as you had before you began taking HIV medication. There are some simple steps you can take to help improve your sleep pattern: exercise regularly avoid caffeine, alcohol or nicotine before going to bed keep a regular sleep schedule if you have been prescribed medicine to help you sleep, use it only when it is really needed don‘t go to bed hungry eat eggs, cod, parmesan cheese or sesame seeds in your evening meal – they contain the amino acid tryptophan, which can help aid sleep Avoid napping during daytime. Some HIV drugs are well-known for having sleep-related side effects. If you take any drug and notice sleep problems, talk to your doctor. Sleep disturbances could also be a side effect of depression. If you are feeling a little low, now is a good time to discuss both problems with your health care team. 156 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives BASIC THEORIES AND ORIGIN OF HIV/AIDS Various alternate theories and other such hypotheses have arisen to speculate about the origins of HIV/AIDS. These alternative ideas range from suggestions that AIDS was the inadvertent result of experiments in the development of vaccines, to claims that HIV was developed by scientists working for the U.S. government. While a few reputable mainstream scientists once investigated some of these theories as reasonable hypotheses, this is no longer the case, as continuing research has invalidated the alternative ideas. Where did HIV originate from? HIV could have originated from an African green monkey. Purportedly the monkey virus "jumped species" and entered the black population. From there it migrated to Haiti and Manhattan. After the virus entered the black heterosexual population in the late 1970s, it rapidly spread to millions of blacks because of transfusions with HIV-infected blood, dirty needles, promiscuity and genital ulcers — or so . Putting aside the aspect of a monkey story, AIDS is biological warfare. AIDS has nothing to do with green monkeys, homosexuality, drug addiction, genital ulcerations, anal sex or promiscuity, but it had to do with scientists experimenting on blacks: in short, AIDS is genocide. HIV is a manufactured virus genetically-engineered to kill off certain people.AIDS is an ethno-specific bio weapon designed in a laboratory to infect some people. Despite the general acceptance that HIV came from monkeys and the rain forest, there is no scientific evidence to prove that HIV and AIDS originated in Africa. What is true is that the first AIDS cases were uncovered in the 157 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives U.S. in 1979, around the same time that AIDS cases were discovered in Africa. In addition, no stored African tissue from the 1970s tests positive for HIV. The Gay Hepatitis-B vaccine experiment Conveniently lost in the history of AIDS is the gay Hepatitis-B vaccine experiment that immediately preceded the decimation of gay Americans. A "cohort" of over a thousand young gays was injected with the vaccine at the New York Blood Center in Manhattan during the period November 1978 to October 1979.Similar gay experiments were conducted in San Francisco, Los Angeles, Denver, St. Louis, and Chicago, beginning in 1980. The AIDS epidemic broke out shortly thereafter. The experiment was run by Wolf Szmuness, a Polish Jew born in 1919. He was a young medical student in eastern Poland when the Nazis invaded the country in 1939. His entire family perished in the Holocaust. When Poland was partitioned, Szmuness was taken prisoner and sent to Siberia. After the war, he was allowed to finish medical school in Tomsk in central Russia. He married a Russian woman, had a daughter, and in 1959 was allowed to return to Poland where he became an expert in hepatitis. Later on, Szmuness defected from Poland with his family in 1969, arriving penniless in New York with $15 in his pocket. Through scientific connections he found work as a laboratory technician at the New York Blood Center. Within a few years he was given his own lab at the center and was also appointed Professor of Public Health at Columbia University. By the mid-1970s, Szmuness was a world authority on hepatitis, and was invited back to Moscow in 1975 to give a scientific presentation. As a defector he was terrified to set foot back in the Soviet Union, but his colleagues assured him he would have the full protection of the U.S. State Department. His return to Russia was a scientific triumph. In the late 1970s, Wolf Szmuness was awarded millions of dollars to undertake the most important mission of his life: the Hepatitis-B vaccine experiment. Szmuness specifically wanted to use gay men to avoid serious legal and logistical problems. For his study he did not want monogamous men, or men with lovers. He chose only healthy, young, responsible, intelligent, and primarily white homosexuals. The experiment was costly and he did not want any uncooperative or hard-to-find gays messing up his experiment. Involved in the experiment were the Centers for Disease Control, the National Institutes of Health, the National Institute of Allergy and Infectious Diseases, Abbott Laboratories, and Merck, Sharp &Dohme. Szmuness‘ experiment was hugely successful, and his vaccine was hailed as having tremendous global implications. Three months after the experiment began; the first cases of AIDS reported to the Center for Disease Control appeared in young gay men in Manhattan in 1979. The first San Francisco AIDS case appeared in that city in September 1980, six months after the Hepatitis-B experiment started there. In June 1981 the AIDS epidemic became "official." Were gay men given experimental vaccines contaminated with the AIDS virus? The US government says no, but government agencies have a long history of covert and unethical medical experimentation, particularly with minorities. Was it simply a quirk of nature that a virus "out of Africa" would suddenly decimate the most hated minority in America? Why did the U.S. government choose Wolf Szmuness, a Soviet-trained doctor and a recent American immigrant to head this dangerous experiment? Literally speaking, Szmuness had a painful life. Confined as a political prisoner in Siberia during World War II, he was repeatedly interrogated and beaten by the Russian forces for refusing to cooperate in spy activities. When he could not be broken, they warned him: "Say nothing of this to anyone, but remember. We will reach you anywhere in the world. No matter where you go, no matter where you try to hide, you will never be out of our grasp." The experimental Hepatitis-B 158 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives vaccine was primarily manufactured by Merck. However, during the experiment Szmuness was concerned about possible vaccine contamination. It was no theoretical fear, contamination having been suspected in one vaccine batch made by the National Institutes of Health, though never in Merck‘s. After the Hepatitis-B experiment ended, Szmuness insisted that all thirteen thousand blood specimens donated by gay men be retained at the Blood Center for future use. Due to space requirements, it is highly unusual for any laboratory to retain so many old blood specimens. However, several years later when this blood was retested for the presence of HIV antibodies, th US government epidemiologists were able to detect the "introduction" and the spread of HIV into the gay community. When asked why he was keeping so many vials of blood, Szmuness replied, "Because one day another disease may erupt and we shall need this material.‖ A few months after the Hepatitis-B experiment began at the Center, the first AIDS cases began to appear in gay men living in Manhattan. And the retesting of gay blood at the Blood Center proved that HIV was first introduced into the gay population of New York City sometime around 1978-1979, the same year Szmuness‘ gay Hepatitis-B experiment began. Was Szmuness psychic in his prediction that a new disease would appear in the gay community? Or did he actually know or suspect that a new, deadly virus was being introduced into the gay volunteers? Unfortunately, the answers to these questions can only be summarized by an intellectual mind. In June 1982 Szmuness died of lung cancer. In his eulogy, Aaron Kellner of the Blood Center wrote: "It is the rare physician who, like Wolf Szmuness, is given the grace to touch the lives of billions of people; those living on this planet and generations yet unborn." And indeed, HIV/AIDS continues to touch billions of people‘s lives from generation to generation. The contaminated vaccine meant for Africans Was HIV introduced into millions of Africans in the late 1970s during the smallpox vaccine eradication programs sponsored by the World Health Organization? It is known that animal and human cells harbor all sorts of viruses, including viruses not yet discovered, and animal tissue cell cultures are often used in the manufacture of viral vaccines. Therefore, the possibility of vaccine contamination with an animal virus is a constant danger in the manufacture of vaccines. Despite the most meticulous precautions in production, contaminating animal viruses are known to survive the vaccine process. For example, during the 1950s, millions of people were injected with polio vaccines contaminated with "SV-40", a cancer-causing green monkey virus. Such vaccine contamination problems are largely kept hidden from the public. Yet in spite of the known danger, drug companies and physicians always pooh-pooh any suggestion that AIDS could have arisen from animal virus-contaminated vaccines.Animal cancer viruses are also contained in fetal calf serum, a serum commonly used as a laboratory nutrient to feed animal and human tissue cell cultures. Viruses in calf serum can be carried over as contaminants into the final vaccine product. The problem of vaccine contamination by fetal calf serum and its relationship to AIDS is the subject of concern. Bovine visna contamination of laboratory-used fetal bovine serum may cause AIDS. Bovine visna virus is similar in appearance to HIV. The seriousness of this becomes apparent when we consider the manufacture of vaccines requires the growth of virus in cell cultures using fetal calf serum in the growth medium. The contamination of vaccines with adventitious viruses has been of concern for many years and the presence of virus-like structures in ‗virus-screened‘ bovine serum has been reported. It seems absolutely vital that all vaccines are screened for HIV prior to use and that bovine visna virus is further investigated as to its relationship to HIV and its possible causal role in progression 159 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives towards AIDS. Millions of African blacks reportedly got infected with HIV. This large number could never have been infected by the simple act of a monkey virus "jumping" over to infect one African in the late 1970s. If that were the case, why don‘t we now have millions of AIDS cases in the U.S.? One logical explanation for the millions of Africans infected is that the vaccines used in the World Health Organization‘s mass inoculation programs were contaminated. Was the contamination accidental or deliberate? It is well-known in vaccine circles that the vaccinia (cowpox) virus used in the manufacture of the smallpox vaccine works well in genetic engineering. It is possible to splice genes coding for the surface coats of other viruses, such as influenza, hepatitis, and rabies into vaccinia virus DNA. The result: a ‗broad spectrum‘ vaccine with a coat of many colors. In 1985, the Russians caused an international furore by claiming that AIDS was caused by experiments carried out in the USA as part of the development of new biological weapons. Responding to this Soviet accusation, Pillar and Yamamoto admit that "although no evidence has been presented to support this claim, manipulating genes to defeat the body‘s immune system is quite feasible." During the years 1966-1977, the WHO utilized "200,000 people in forty countries — most of them non doctors trained by seven hundred doctors and health professionals from over seventy participating countries — spent $300 million, and used forty million bifurcated vaccinating needles to administer 24,000 million (2.4 billion) doses of smallpox vaccine."On May 11, 1987, The London Times, one of the world‘s most respected newspapers, published a front-page story entitled "Smallpox vaccine triggered AIDS virus." The story suggests that African AIDS is a direct outgrowth of the WHO smallpox eradication program. The smallpox vaccine allegedly awakened a "dormant" AIDS virus infection in the black population. Robert Gallo, the co-discoverer of HIV, said, "The link between the WHO program and the epidemic is an interesting and important hypothesis. I cannot say that it actually happened, but I have been saying for some years that the use of live vaccines such as that used for smallpox can activate a dormant infection such as HIV (the AIDS virus)." The Times story is one of the most important stories ever printed on the AIDS epidemic; yet the story was killed and never appeared in any major U.S. newspaper or magazine. Despite covert human experimentation, vaccine contamination problems, and the genetic engineering of new and highly dangerous viruses, the medical establishment ignored the AIDS bio-warfare issue. For example, in the prestigious British Medical Journal (May 13, 1989), Myra McClure and Thomas Schultz wrote a paper on the "Origin of HIV" and quickly disposed of the idea that AIDS is connected to germ warfare. They simply state: "Lack of supporting evidence precludes serious discussion of such a bizarre hypothesis. This review deals with the theories on the origin of HIV that are scientifically plausible." Thus, medical science ignores evidence suggesting AIDS originated as a secret experiment. Most physicians and microbiologists steadfastly hold on to the illogical and improbable green monkey theory of AIDS. And the major media remain silent, often dismissing the bio-warfare theory as communist propaganda of the most malicious sort. Forgotten is the connection between the National Academy of Sciences and the military bio-warfare establishment in the development of biological weapons for mass killings. Creation of a super germ 160 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives A decade before the first cases of AIDS, Dr. Donald M. MacArthur, a spokesman for the U.S. Department of Defense, told a Congressional Hearing that a "super germ" could be developed as part of our experimental bio-warfare program. This genetically engineered germ would be very different from any previous microbe known to mankind. The agent would be a highly effective killing agent because the immune system would be powerless against this super-microbe (Testimony before a Subcommittee of the Committee on Appropriations, House of Representatives, Department of Defense Appropriations for 1970, dated July 1, 1969). A transcript of this meeting on "Synthetic Biological Agents" records the following comments of Dr. MacArthur: 1. All biological agents up to the present time are representatives of naturally occurring disease, and thus are known by scientists throughout the world. They are easily available to qualified scientists for research, either for offensive or defensive purposes. 2. Within the next 5 to 10 years, it would probably be possible to make a new infective microorganism which could differ in certain important aspects from any known diseasecausing organisms. Most important of these is that it might be refractory to the immunological and therapeutic processes upon which we depend to maintain our relative freedom from infectious disease. 3. A research program to explore the feasibility of this could be completed in approximately 5 years at a total cost of $10 million. 4. It would be very difficult to establish such a program. Molecular biology is a relatively new science. There are not many competent scientists in the field, almost all are in university laboratories, and they are generally adequately supported from sources other than the Department of Defense. However, it was considered possible to initiate an adequate program through the National Academy of Sciences — National Research Council (NAS-NRC). The matter was discussed with the NAS-NRC, and tentative plans were made to initiate the program. However, decreasing funds in CB (chemical/biological) research, growing criticism of the CB program, and our reluctance to involve the NAS-NRC in such a controversial endeavor have led us to postpone it for the past two years. It is a highly controversial issue and there are many who believe such research should not be undertaken lest it lead to yet another method of massive killing of large populations... Should an enemy develop it, there is little doubt that it is an important area of potential military technological inferiority in which there is no adequate research program. Was HIV or other so-called ―emerging viruses such as Ebola and Marburg viruses, created in biowarfare laboratories during the 1970s? During the 1970s, the U.S. Army‘s bio-warfare program intensified, particularly in the area of DNA and gene splicing research. Renouncing germ warfare except for "medical defensive research," President Richard Nixon in 1971 ordered that a major part of the Army‘s bio-warfare research be transferred over to the National Cancer Institute (where HIV would be discovered a decade later by Gallo). That same year, Nixon also initiated his famous War on Cancer, and offensive bio-warfare research (particularly genetic engineering of viruses) continued under the umbrella of orthodox cancer research. Cancer virologists learned "to jump" animal cancer viruses from one species of animal to another. Chicken viruses were put into lamb kidney cells; baboon viruses were spliced into human cancer cells; the combinations were endless. In due process, deadly man-made viruses were developed, and new forms of cancer, immunodeficiency, and opportunistic infections were produced when these viruses were forced or adapted into laboratory animals and into human tissue cell cultures. As predicted by the bio161 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives warfare experts, new cancer-causing monster viruses were created that had a deadly effect on the immune system. In one government-sponsored experiment reported in 1974, newborn chimpanzees were taken away from their mothers at birth and weaned on milk obtained from virus-infected cows. Some of the chimps sickened and died with two new diseases that had never been observed in chimps. The first was a parasitic pneumonia known as Pneumocystis Carinii pneumonia (later known as AIDS); the second was leukemia. Monkey business Most people still believe the green monkey story; and AIDS educators teach that HIV originated in Africa. However, a few cracks in the monkey theory appear in the print. A story entitled "Research refutes idea that human AIDS virus originated in monkey," appeared in the Los Angeles Times (June 2, 1988). In the process of decoding the genetic structure of the monkey virus and the human AIDS virus, Japanese molecular biologists discovered that the gene sequences of the two viruses differed by more than 50% — indicating absolutely no genetic relationship between the green monkey virus and HIV. The Japanese investigators specifically criticized Myron Essex and Phyllis Kanki of Harvard Medical School, who "discovered" a second AIDS virus in African green monkeys that was widely heralded in the media. Essex and Kanki‘s "second" AIDS virus was later proven to be a contaminant monkey virus traced back to the Harvard researchers own laboratory. More than a decade earlier, in 1975, Gallo reported the "discovery" of a "new" and "human" HL23 virus he cultured from human leukemia cells. Eventually the virus was proven to be three contaminating ape viruses (gibbon-ape virus, simian sarcoma virus, and baboon endogenous virus). Gallo claimed he had no idea how these animal viruses contaminated his research. If HIV is not related to a green monkey virus, what is its origin? On November 13, 1988, The Orange County Register devoted an entire section of the newspaper to AIDS in Africa. Several African officials were interviewed; all were adamant that AIDS did not originate in Africa. The theory "is false and has never been scientifically proved, so why should Africa be the scapegoat?" declared Dr. DidaceNzaramba, director of the AIDS prevention program in Rwanda. The Register commented: From early on, scientists have speculated that the disease might have begun in Africa. Researchers in Africa tested old blood samples and said they found HIVinfected serum that went back years. In 1985, Harvard researchers, Phyllis Kanki and Myron Essex, announced the discovery of a new virus isolated in green monkeys that seemed similar to HIV. Eventually, researchers concluded that early blood tests used in Africa were not reliable, and Kanki and Essex said their blood tests probably had been contaminated and that their results were invalid. But the perception of an African link was established. Media disinformation With the publication of And the Band Played On in 1987, the media became obsessed with author Randy Shilts‘ "Patient Zero" story. In the popular, award-winning book, a young Canadian airline steward named GaetonDugas is portrayed as the promiscuous gay man "who brought the AIDS virus from Paris and ignited the epidemic in North America." Shilts, who later died of AIDS, never explained where or how Dugas got his infection. After a year of swollen lymph nodes and a rash, Dugas was finally diagnosed with AIDS-associated "gay cancer" in June 1980 in New York City. What Shilts probably did not know is that when Dugas was diagnosed in 1980, over twenty percent of the Manhattan gays in the Hepatitis-B experiment 162 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives were HIV-positive. This 20% infection rate was discovered after the HIV blood test became available in 1985, and after the stored blood at the New York Blood Center was retested for HIV antibodies. Remarkably, these gay men had the highest recorded incidence of HIV anywhere in the world for that time! Even in African populations, where AIDS had been theorized to exist for decades, or even millennia, there were never reports of such a high incidence of HIV in 1980.Shilts‘ sensational Patient Zero story quickly became "fact." Even the AMA-sponsored American Medical News (October 23, 1987) fell for the ludicrous story, claiming that Dugas "may have brought AIDS to the United States." The media continued to promote unlikely stories about the origin of AIDS, always avoiding discussion of the idea that HIV came out of a laboratory, and always pointed the finger to black Africa. In late 1987, the media widely reported an "old AIDS case" dating back to 1968. DNA testing of the blood and tissue was reported as HIV-positive. For the last year of his life, "Robert", a 15year-old black boy from St. Louis, wasted away with a bizarre disease that severely bloated his legs and genitalia. His sexual preference was unknown, but his doctors tried hard to insinuate the dying boy was gay. At autopsy, internal Kaposi‘s sarcoma of the rectum was discovered, along with anal warts and lacerations. And after fingering the dead boy‘s rectum, the pathologist noted "a lax anal sphincter." When newer viral identification techniques were reapplied to Robert‘s blood in 1990, his blood retested HIV-negative, proving that Robert never had AIDS. In 1990 the media sensationalized another "old AIDS case," this time an unmarried English sailor who died in Manchester in 1959. When his stored tissue remains tested positive for HIV, major newspapers throughout the world used this case to again discredit the persistent rumor that AIDS was a man-made disease. The New York Times (July 24) declared: The case also refutes the widely publicized charges made by Soviet officials several years ago that AIDS arose from a virus that had escaped from a laboratory experiment that went awry or was a biological warfare agent. The human retrovirus group to which the AIDS virus belongs was unknown at the time. Nor did scientists then have the genetic engineering techniques needed to create a new virus. In a letter to the medical journal Lancet in January 1996, this 1959 case was ruled not to be AIDS because the DNA tests were found to be contaminated due to a laboratory error. Despite the denial of the Times regarding the laboratory creation of new AIDS-like viruses, it was common practice during the early 1970s for virologists to alter animal viruses by inserting them into other animal species and into human tissue cells in culture. Experiments performed at Harvard in the mid-1970s by Max Essex and Donald Francis (two of the best-known AIDS experts) produced AIDS in cats with the feline leukemia retrovirus. In addition, a decade before the outbreak of AIDS in the U.S., Robert Gallo was engineering cancer-causing retroviruses and studying the effects of viral mutants and their ability to suppress the immune system. Biological warfare research It is difficult, if not impossible, to determine the truth about global biological warfare capabilities and their possible effects on world health. In most countries, the taxpayer is kept ignorant about the government‘s chemical and bio-warfare programs. Scientists involved in bio-warfare research are sworn to secrecy and silence. Thus, "classified" and "top secret" medical experimentation continues to be promoted by powerful government agencies, such as the Department of Defense, the military, and other institutions. Revelations of horrific radiation experiments conducted on unsuspecting U.S. citizens during the Cold War years up until the 1980s shocked everyone. Some of this research was conducted at the most prestigious medical 163 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives institutions. None of the perpetrators were brought to trial. In light of these revelations, it is inconceivable to think that leading AIDS scientists would be unaware of the connections between their institutional research and the bio-warfare establishment. Nevertheless, strange and unprecedented diseases mysteriously surface in various parts of the world. The peculiar Persian Gulf War Syndrome sickened over 50,000 of the vets who served in Desert Shield/Storm. Their illnesses were largely dismissed by health experts as due to "psychological stress," even though there was evidence that this new disease was contagious and sexually-transmitted. Nevertheless, most health officials remained silent on such issues. A few scientists insisted that some cases of Gulf War Syndrome were related to biological warfare agents. Dr. Garth Nicholson and his wife Nancy, formerly scientists at the M.D. Anderson Cancer Center in Houston, discovered in the blood of some sick reservists a new infectious microbe (a mycoplasma) that had part of the AIDS virus spliced into its genetic material! The Nicholsons said: "The type of mycoplasma we identified was highly unusual and it almost certainly didn‘t occur naturally. It has one gene from the HIV-1 virus — but only one gene. This meant it was almost certainly an artificially modified microbe — altered purposefully by scientists." (National Enquirer, April 2, 1996).By censoring certain aspects of AIDS history, particularly the origin of HIV, it gave way for dangerous medical experimentation to continue. From 2009 on words, the New York Blood Center was testing a new vaccine made from a "harmless" canary-pox virus that had been genetically engineered to carry parts of HIV, the AIDS virus. The Center was recruiting HIV-negative gay men by funding Project Achieve, an organization designed to test and sign-up young men for the new vaccine experiment. Homosexual men were lured into the program by posters that featured cute, multi-ethnic gay boys. According to Timothy Murphy of HX magazine, there was a waiting list for the Center‘s vaccine experiment. Gay men were urged to sign-up with Project Achieve at (212) 388-0008. The enigmatic Dr. Szmuness has been erased from AIDS chronicles. His name does not appear in Shilts‘ Band, nor in MirkoGrmek‘s History of AIDS (1990), or in Laurie Garret‘s massive tome on emerging viruses, The Coming Plague (1994). Although his untimely death went largely unnoticed in medical journals, he was remembered and honored on May 11, 1984, by a small coterie of medical power brokers and distinguished scientists who convened at a landmark symposium in the U.S. capital. The meeting entitled "Infection, Immunity, and Blood Transfusion" was sponsored by the American Red Cross. Paying tribute to Szmuness were top government scientists in AIDS and cancer research, the most well-known researchers in animal experimentation, the heads of the most prestigious biomedical establishments in the country, and the chief executives of drug companies tied to genetic engineering, vaccine production, and biological warfare research. Dr. Robert Gallo, who had announced the discovery of the AIDS virus to the American public three weeks earlier, was one of the most distinguished attendees. There is an ominous link between cancer and AIDS, between animal experimentation and the genetic engineering of viruses, between biological warfare technology and drug companies, between gay experiments and AIDS, between vaccine programs and the contamination of the US‘s blood supply. Why else did all these people from diverse areas of science attend this high level government conference? There is also a connection between Szmuness‘ gay experiment and the outbreak of AIDS that cannot be denied. This connection is not coincidental or a paranoid fantasy. It is time for a serious study of the link between covert biological warfare research and the initial outbreak of the "gay AIDS plague." Ignoring evidence pointing to AIDS as a man-made disease makes a shame out of AIDS education. 164 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Finally, the genesis of HIV/AIDS remains a subject of debate. It is likely that we will never know the first person to get infected with HIV, or exactly how it spread from that initial person. But the point of concern is not based on how the virus originated, but how those it affects can be treated, how the further spread of HIV can be prevented and how the world can respond proactively to ensure that a similar pandemic never occurs again. MALE CIRCUMCISION Male circumcision refers to the surgical removal of the entire foreskin (prepuce) from the penis. Circumcision is a very painful operation which at times requires the application of a local anesthetic for very young children although the individual will still experience pain. In hospitals, the cutting process may take over 15 to 20 minutes. In older boys, the procedure is performed under the influence of a general anesthetic that numbs the pain; it is injected at the base of the penis or in the shaft but can also be applied as a cream. The procedure can be carried out at any stage during infancy, childhood, adolescence or adulthood. In adult men a four to six weeks period is necessary for the wound to heal fully compared to the one – week period when circumcision is performed for babies. Preparation for circumcision The preparation process for adult men and post pubescent teenagers going for circumcision differs from that of young children and new born babies. Those who intend to be circumcised should seek for advice from hospitals or skilled personnel so that they know what to expect beforehand. The ideal circumcision surgeon should possess the following qualities:An expert in sterilization techniques Acquainted with surgical procedures Have enough information on HIV infection Pain management Post operation care Counseling about wound care Timing is very important because one needs enough time to heal after the procedure, children should be circumcised during school holidays. Basically one must know the risks involved and talk to the doctor regarding the use of anesthetic and antibiotics that you may be allergic to. Circumcision type This is a time to discuss with the doctor any particular outcome that you require e.g. a ‗tight‘ or ‗loose‘ circumcision, ‗high‘ or ‗low‘ placement of the scar line, removal or retention of the 165 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives frenulum. Always be specific and show the surgeon or doctor where you want the scar line placed. Before the Operation At this stage, you should trim your public short. This is because long air strands can get tangled with the bandage causing pain to you (the individual). If you are an adult, it is vital to note that there is a six week healing period during which you will not be able to have sexual intercourse. Therefore, you should be sexually satisfied before going for the operation. Do not take alcohol prior to the operation because it reduces the effectiveness of the local anesthetic. The morning before the procedure, have a thorough bath paying attention to the genitals. Retracting the foreskin as far as you can and cleaning under it. Operation Stage Be calm as the operation may take less than 15 minutes. You will be advised to lay on bed and your lower abdomen will be covered with a cloth. Your private parts will be washed with cold water and patted dry. You may receive up to five shots of injection in the groin area. Here, you can clench your teeth, let out a silent groan and blow out warm air to the blue screen that hung above your chest, obstructing you from seeing what the surgeons are doing. After a few minutes, all you will feel is the sound of scissors. The procedure takes about a quarter of an hour. Then you will proceed to the resting room and rest on a mat for about three hours. You will be advised on how to take care of the wound and also receive pain killers and condoms. The following day, the morning erection causes little pain, but it is manageable. It will take about three weeks to heal. And you do not have to go back to the hospital for review or to remove the stitches; they dissolve on their own. After the Operation If you have just completed the procedure, their entire penis will be swollen and look very bruised but this is normal and the swelling gradually reduces after a period of one to two weeks. It is also important to wear underwear that protects the penis from rubbing against your clothes as this may cause more pain. You may bandage only the immediate area of the cut but it is advantageous to apply a bandage to the entire shaft. This bandage will normally be of a special compression type or else be wound tightly around the penis. The bandage serves two purposes: Protecting the wound, and to contain and reduce the swelling. For the case of children, once the foreskin has been cut off, healing takes up to seven days. Occasionally, there may be complications after the operation, including infection and scaring. Try to be vigilant for such side effects and get medical advice immediately. After Surgery, recovery is characterized by; A thin yellow film to form over the circumcision site the day after surgery. This is part of the normal healing process and should disappear in a few days. The baby to become irritable. Your baby may not sleep as well and may seem fussy while the circumcision site heals. The baby to have pain while urinating. It is painful when healing skin comes in contact with urine and stool. This pain fades within three or four days but may persist for up to two weeks. The penis usually appears better after three days, as it may become worse again. From 7-10 days the penis starts to look better and this is the true journey to recovery. 166 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Stitches (sutures) are not used for infant circumcision. Sutures are used when circumcision is done on a grown up child or an adult. Care after Circumcision You can help make the baby feel comfortable and heal more quickly by; gently washing the penis with warm water after each diaper change. Do not use soap. Do not attempt to remove the film that forms on the penis. The film will go away on its own as it dries. Apply petroleum jelly such as Vaseline liberally to raw areas on the head and / or shaft of the penis during each diaper change. The petroleum jelly prevents the scab from sticking to the diaper. Make sure diapers are fastened loosely to decrease irritation of the penis. Intervention of a doctor Your son‘s penis will be examined during routine baby visits. However, it is important to call your health worker should problems persist after circumcision. Call the health worker immediately if your baby; Is younger than three months of age and has a fever. Develops signs of infection on the penis or around the circumcision site. Signs may include, severe swelling, redness, a red streak on the shaft of the penis, or a thick, yellow discharge. Bleeds more than the doctor said to expect or has a blood stained area larger than the size of a bottle cap on his diaper or on the circumcision site dressing. Is extremely fussy or irritable, has a high pitched cry, or refuses to eat. Has not passed urine within 12 hours after the exercise. Benefits of male circumcision At least half of all uncircumcised men develop one or more problems over their lifetime caused by the foreskin. With surgical removal of the foreskin, such problems can be avoided. However, circumcision must be done under hygienic conditions. This distinguishes it from cultural forms of circumcision that may be mandatory, or may not be done under hygienic conditions. The greatest advantage of circumcision is that it is a one – off procedure, with no ongoing costs or supply issues to worry about. Once a boy or man undergoes the procedure, he will benefit from the prevent effect for the rest of his life. Safe male circumcision offers partial protection to an HIV-negative male who goes on to have unprotected sexual intercourse with an HIV-positive female. The part which remains after cutting off the loose skin is left exposed and eventually dies resulting to an insensitive skin (keratinization), which makes it hard for HIV virus to penetrate. Other key strategies (like, abstinence, condom use and being faithful to your partner) that offer partial protection should, however, be used to maximize the benefits of safe male circumcision. Bacteria and other micro-organisms proliferate under the foreskin, triggering infections in the urinary tract. Safe male circumcision, therefore, offers men protection against various sexually transmitted infections and their sexual partners from urinary tract infections. Uncircumcised men are more likely to harbor the cancer-causing Human Papilloma Virus (HPV) in their foreskin. Safe circumcision, therefore, offers protection from cancer of the 167 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives penis. Circumcision also offers protection from ulcerative sexually transmitted diseases including genital herpes, syphilis and chancroid. Male circumcision reduces the risk of abrasion, bruises, and tears during sexual intercourse which are direct routes for HIV infection. Circumcision prevents balanitis and prosthitis .Balanitisis is a state of infection that causes inflammation (reddening and pain) on the head of the penis, whereas prosthitis is a similar condition that causes inflammation inside the foreskin. In babies, balanitis is caused by soiled diapers, as well as playing or sitting in dirty areas. Some uncircumcised men have a problem with retraction of the glans (head of the penis) retracting. Circumcision also offers protection from this condition and other recurrent infections of the foreskin which lead to loss of skin elasticity. Circumcised men do not suffer from health problems associated with the foreskin such as phimosis and paraphimosis. Phimosis; is a condition characterized by the inability to retract the foreskin. It becomes difficult and painful to move the foreskin on and off from the penis tip. In such a situation, there is a very small opening for urine to pass through. This makes the urine to accumulate inside as the foreskin becomes swollen and painful. Paraphimosis- is the swelling of the retracted foreskin causing difficulty to return it to its normal position. Circumcision is also a solution for a tight foreskin that becomes tighter during erections. Circumcision eliminates a bad smell and infections that may be caused by smegma. Smegma is a white substance that is concentrated under the foreskin of uncircumcised men. In addition, some drops of urine may remain trapped inside the foreskin providing a fertile ground for germs, bacteria and viruses to hide and possibly cause infections At times, it is a solution for pre-mature ejaculations. Benefits to a female partner A female sexual partner of a circumcised man has fewer risks of acquiring cervical cancer (cancer of the cervix). This cancer is mainly caused by the human papilloma virus, which is more easily spread by uncircumcised men. As such, male circumcision also benefits women indirectly. The benefits include protection from HIV, Cervical cancer, genital herpes and bacterial vaginosis, a disease of the vagina caused by bacteria. Demerits It is a painful exercise coupled with prolonged illness. The exercise may result into sexual insensitivity in some men. Sometimes, the skin is cut too short and not stitched to the base. In children, especially fat ones, the penis may retract inside as the skin heals, sealing off the glens from inside. Complications of traditional male circumcision Circumcision outside health facilities may lead to; Heavy bleeding and damage to other parts. High risk of infection-sharing unsterilized tools 168 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Incomplete circumcision which may necessitate re-circumcision. Excessive pain-when urinating. Importance Inadequate information-men are tempted into sex when their wounds have not healed; this is an increased risk to HIV infection through their broken skin. Myths surrounding Male Circumcision Some people believe that the practice is barbaric and a degradation of one‘s human right because it demeans the appearance and function of the male organ. The right to consent is not taken into consideration especially when it is carried on a child with little knowledge. For one to qualify as a local surgeon he must be possessed with local spirits and this is common among the Bamasaaba community dwelling in East Africa. You may not be eligible for circumcision if; You are sick, was born prematurely and still unable to go home. Have a family history of bleeding difficulties. Have a swelling in the spinal cord and an abnormal opening of the rectum. Sexual pleasure and male circumcision Sexual pleasure comes from many sources besides the impacts of male circumcision, these are; The involvement of the brain Sensitivity from the body parts in action Emotional bond intensity between you and your partner Sense of protection Level of guilt and comfort etc. COUNSELING PROCESS HIV/AIDS counseling refers to the provision of support and strength to individuals, couples, families or groups by, competent persons, to help them cope with knowledge that they are infected or affected by HIV. It is an ongoing process that allows individuals to develop a sense of responsibility in meeting challenges posed by their infection. When we seek, or accept, help with an issue we have been unable to resolve on our own, there is often an emotional component in the situation. We often feel bad about needing help. The problem may itself cause confusing feelings "I like my boss but she/he drives me mad doing X, dare I level with her/him?" In the latter case feelings of liking, irritation and anxiety are present together. It is extremely difficult to think clearly when we are feeling strong feelings whether good or bad. The primary function of counseling is to help people think clearly when feelings are present. The feelings can arise from an experience in the present. Hearing "Your job is redundant" would obviously generate negative feelings in most people. Someone who got into trouble with head teachers at school might equally find meeting a senior administrator intimidating. This would remind that person of the earlier painful experience. He or she would then find it hard to think. HIV counseling has as its objectives, both prevention and care. A counselor is a person trained in 169 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives the skills of the job: listening to the client, asking supportive questions, discussing options, encouraging the client to make his or her own informed decisions, giving practical information and suggesting follow-up. Counseling skills The speed and complexity of modern life continue to increase as do people's expectations from it. Coping well requires autonomous and flexible thinking and clear decisions. Unfortunately most of us have been conditioned to conform, not think for ourselves. Counseling skills help people to change as they learn to think things through for themselves and make their own decisions, free of the effects of past conditioning. The counselor‘s job is to help the other person, the client, help him/herself. If the client is to feel safe enough to be open about her/his thoughts and feelings, he/she needs to feel safe, respected and understood. Below is a table of some skills. The counselor must Listen Not judge Pay attention Accept the client's feelings So that the client can Develop his/her thinking Feel safe and respected Know you care Know he/she is not being judged Understand the client's world Know you are with him/her and feelings; put yourself in the client's shoes. Express that understanding. Think about the client Get the best help possible The counselor may So that the client can Ask questions Develop her/his own thinking Summarize Hear her/his thoughts and know she/he is understood. Ask the client to try new Release blocking emotion behavior in the counseling such as unexpressed anger or session sadness. Counselors should not This will make the client Argue Defensive Dwell on their own Withdraw difficulties Solve the problem for the Dependant client Give advice Dependant or hostile Belittle the clients' concern Withdraw or attack Avoid painful areas Be frustrated The rationale for counseling Presumably all humans have immense potential and are intrinsically intelligent, powerful, cooperative, zestful and loving. Unfortunately, this basic nature is often obscured as we grow older. Our nature is such that we are easily hurt and when hurting our thinking process shuts down. 170 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives When we act without thinking, the consequences often cause further hurts (distress) which reduce our capacity to think in the situation still further. We then behave in a rigid, stereotyped way every time we experience a situation that reminds us enough of the original situation in which we were hurt. This complex process develops rigid (patterned) responses to situations rather than a flexible appropriate response. Fortunately, we had highly effective mechanisms for discharging our hurts and thus recovering our ability to think in any situation. A child that is experiencing, or has experienced hurt, will typically find someone, often an adult, and get this person to pay attention to him/her. The child will then talk actively, laugh, sweat, shake, and have a tantrum (storm), cry or yawn. If the adult can stay in touch with the child, perhaps offer a warm hug or hold a hand, the child will discharge the painful emotion exhaustively and then go back to playing etc. quite freely and with no rigidities installed by the hurtful experience. The above describes the counseling process in its natural state. Unfortunately most adults have had their discharge processes thoroughly interfered with in their childhood so will suppress the exhaustive discharge required because it disturbs them. Children quickly learn that discharging painful emotion is punished and learn further rigid ways of controlling their feelings, when discharging them would be helpful. In the counseling process the counselor provides the love, safety and attention necessary for the client to feel her/his feelings and discharge them. The feelings that condition behavior in rigid patterns may arise from present hurts or past hurts. It is necessary for the counselor to examine many ways to identify and outwit the client's patterns, including the control patterns, so they can discharge. Isolation is a component in almost all hurts so simple, warm, attentive listening is often enough. Where it is not, the counselor has to listen well enough to understand where the client is hurting. Then he or she must think how to show to the client that the rigid injunctions he/she feels are distress not reality and do so. An example could be a client whose hurt is about being accommodating and being exploited who says "I have to put up with it, I am lucky to have a job". The counselor might ask the client to stand proudly and say in a confident tone "I am NOT going to be a victim ever again". S/he would find this difficult to say and would laugh, cry, sweat and perhaps get angry trying to do so. This would, when persisted in, discharge the hurts that installed the victim pattern in the first place. Following discharge, the client can think clearly about the painful experiences and decide what to do freely without the compulsion of the "victim" pattern. There are literally hundreds of techniques like the above to deal with particular distresses. Types of counseling 1. Pre-test counseling HIV counseling is often given in connection with a voluntary HIV test. Such counseling helps to prepare the client for the HIV test, explains the implications of knowing that one is or is not infected with HIV, and facilitates discussion about ways to cope with knowing one‘s HIV status. It also involves a discussion of sexuality, relationships, possible sex- and drug-related risk behaviors, and how to prevent infection. It helps correct myths and misinformation around the subject of AIDS. Whenever resources permit, pre-test counseling should be made available to those who desire it. People who do not want or do not have access to pre-test counseling should not be prevented from taking a voluntary HIV test, however. In contrast, informed consent is always required before an HIV test where the individual‘s name will be linked to the result. To allay anxieties 171 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives while awaiting the test result, some individuals may seek support not only from their own families or a knowledgeable community worker. 2. Post-test counseling Post-test counseling helps the client understand and cope with the HIV test result. Here, the counselor prepares the client for the result, gives the result and then provides the client with any further information required, if necessary referring the person to other services. The two usually discuss ways to reduce the risk of infection or transmission. HIV test results should always be given with counseling. The form of post-test counseling will depend on what the test result is. Where it is positive, the counselor needs to tell the client clearly, and as gently and humanly as possible, providing emotional support and discussing with the client on how best to cope, including information on relevant referral services. 3. Ongoing counseling Enables clients to accept their HIV status, and take a positive attitude to their lives. Through ongoing counseling the infected person may choose to invite a trusted family member to share confidentiality and participate in the counseling—enabling the family to start practicing family level counseling. But counseling is also important after a negative result. While the client is likely to feel relief, the counselor must emphasize several points. First, because of the ―window period‖, a negative result may not mean absence of infection, and the client might wish to consider returning for a repeat test after 3-6 months. Second, counselors need to discuss HIV prevention, providing support to help the client adopt and sustain any new safer practices. Counseling behavioral change The availability of HIV counseling, even without HIV testing, may create a private environment for discussing sexual matters and personal worries. Counseling augments AIDS education by making HIV related information personally relevant. Counseling - children In many places, children are increasingly affected by the epidemic. Apart from those themselves infected with HIV, they include children where one or both of the parents are either living with HIV or AIDS or have died of AIDS. These children have special counseling needs, such as the emotional trauma of seeing their parents being ill or die discrimination by other children and adults, and emotional worries about their own continuing illness. Older children may need counseling related to sexual issues, and on the avoidance of risk behavior. Counseling pregnant women Counseling can benefit pregnant women—or women wanting to become pregnant— who are either HIV-positive or unaware of their HIV status. It facilitates their making informed decisions about whether to become pregnant if HIV-infected; whether to take a test before pregnancy; and, if pregnant, whether to terminate the pregnancy, where abortion is legally available. Where possible, and when the woman agrees, it is advantageous to involve her male partner in the counseling sessions. Ideally, women should have counseling available to them before they become pregnant. 172 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Couple counseling Counseling is sometimes provided to a pair of sex partners, who agree to attend sessions together. It can help resolve misunderstandings between the two people—such as over worries when one of them is tested HIV-positive— that can lead in some cases to violence, particularly against women. Couple counseling can also be given to a client and his or her sex partner or spouse, before or after an HIV test. It is also provided as part of premarital counseling. Clinical Counseling7 An individual attending a health center with a confirmed HIV positive result will require information on the HIV result and its implications. The attending clinician may wish to follow up the individual or may delegate this responsibility to a trained counselor. The patient needs to be involved in this decision so that issues of confidentiality are dealt with. Follow up of the patient may be in the outpatient clinic or in the ward. During the initial meeting an assessment to determine the circumstances that lead to an HIV test being performed should be done.Based on the outcome of this the individual can then be provided supportive or problem solving counseling or a combination of both. If there is an underlying medical condition that requires treatment, this should be attended to first before HIV counseling is offered. Whether admitted or reviewed in the clinic, the counselor should take the opportunity to plan with the patient how follow up counseling will be provided. With the patients consent relatives may be involved in the counseling process. Based on the patient‘s needs, plans for referral to other health and social services can be made. Home-based care as a complement to hospital care should be considered if it is available. An individual with suspected HIV infection is admitted to the hospital with a medical condition requiring treatment. The medical condition should be attended to without discrimination before HIV testing is done. Appropriate treatment is given according to the presenting condition. The patient is offered pre-test counseling by the attending clinician, or a trained counselor. This involves the giving of information on the technical aspects of HIV testing and possible personal, medical, social, psychological and legal implications of being found either HIV positive or HIV negative. The information is given in a manner that the individual understands and feels he/she can make an informed decision about taking the HIV test. The issue of confidentiality surrounding test results and subsequent counseling and follow up is also covered. If the outcome of pretest counseling is favorable the individual is then tested using the approved testing procedure. Post-test counseling is given by the clinician or a trained counselor. This involves discussing the interpretation of an HIV result and whether it was expected or not. The focus of the discussion will depend on whether the result is positive, negative or equivocal. Psychological issues in HIV/AIDS counseling Shock of diagnosis recognition of mortality Loss of hope for the future Fear and anxiety uncertain prognosis effects of medication and treatment/treatment failure of isolation and abandonment and social/sexual rejection 173 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives of infecting others and being infected by them of partner's reaction Depression in adjustment to living with a chronic viral condition over absence of a cure over limits imposed by possible ill health possible social, occupational, and sexual rejection if treatment fails Anger and frustration over becoming infected over new and involuntary health/lifestyle restrictions over incorporating demanding drug regimens, and possible side effects, into daily life Guilt interpreting HIV as a punishment; for example, for being adulterous or using drugs over anxiety caused to partner/family Counseling can also be offered to clients and their partner together. The worried well There are some clients who come with multiple physical complaints which they interpret as sure evidence of their HIV infection. Typically, fears of infection reach obsessive proportions and frank obsessive and hypochondriacal states are often manifested. This group shows a variety of characteristic features, and they are rarely reassured for more than a brief period after clinical or laboratory confirmation of the absence of HIV infection. A further referral for behavioral psychotherapy or psychiatric intervention may be indicated, rather than frequent repetition of HIV testing. Characteristics of the worried well Repeated negative HIV tests Low risk sexual history, including covert and guilt inducing sexual activity Poor post adolescence sexual adjustment Social isolation Dependence in close relationships (if any) Multiple misinterpreted somatic features usually associated with undiagnosed viral or post viral states (not HIV) or anxiety or depression Psychiatric history and repeated consultation with general practitioners or physicians High levels of anxiety, depression, and obsessional disturbance Increased potential for suicidal gesture Coping strategies The importance of encouraging and working towards coping strategies involving active participation (to the extent the client can manage) in planning of care and in seeking appropriate social support can be demonstrated clinically and empirically. Such an approach includes encouraging problem solving, participation in decisions about their treatment and care, and emphasizing self-worth and the potential for personal control over manageable issues in life. 174 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Many clients diagnosed with HIV some years ago are now feeling well enough to return to work and to study and are, paradoxically, learning to readjust to living, as they had formally adjusted to the possibility of dying. Clients also have to deal with the uncertainty which remains about the long term efficacy of current medical treatment, and there are some who fail on combination therapy. Even with the significant medical advances in client management, counseling remains an integral part of the management of clients with HIV, and their partners and family. Basic counseling principles The advent of HIV/Aids in the world has forced all of us to accept a paradigm shift from curing towards caring. Because we have no cure for HIV/Aids, we have to focus our interventions on caring for the physical as well as the psychological welfare of the HIV positive individual and his or her significant others. The HIV positive individual needs to find ways to live a psychologically healthy life after diagnosis. The need for counselors to assist HIV positive individuals and their loved ones are so great, that we need to equip everyone in the helping professions with the necessary skills to be effective HIV/Aids counselors. The single most important requirement to be an HIV/AIDS counselor is to have compassion for another person's struggle to live beyond the confines of a disease, and the willingness and commitment to walk the walk with this person and his or her significant others. The aims of counseling or helping a client must always be based on the needs of the client. The purpose of counseling is twofold: (1) to help clients manage their problems more effectively and develop unused or underused opportunities to cope more fully, and (2) to help and empower clients to become more effective self-helpers in the future. Helping is about constructive change and making a substantive difference to the life of the client. But only the client can make that difference: the counselor is merely an instrument to facilitate that process of change. Qualities of an effective counselor To be an effective counselor, you need the following qualities or values: 1. Respect The belief that every person is a worthy being who is competent to decide what he or she really wants, has the potential for growth, and has the abilities to achieve what he or she really wants from life. A counselor can show his or her respect to clients in the following ways: Accept the client by showing unconditional positive regard. This means that you as counselor accept the client as he or she is, irrespective of the client's values or behavior and of whether you as a counselor approve of those values and behavior or not. If you are judgmental who condemns clients or who makes clients feel that their sexual behavior is offensive, you will not be able to facilitate healing, and will only do harm. Respect the client's rights. Individuals have a right to be who they are, a right to their own feelings, beliefs, opinions and choices. Respect the uniqueness of each client. Refrain from judgment. You are there to help your clients, not to judge or to blame them. Since HIV infected individuals often already feel that they are ―guilty‖ or ―bad‖ before counseling even starts, only nonjudgmental attitudes on your part will facilitate understanding and growth. Remain silent and imperturbable and never react with embarrassment, shock or disapproval when clients discuss painful situations or their sexual practices with you. 175 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives 2. Genuineness and congruence you must be honest and transparent in the counseling relationship. A genuine or congruent counselor demonstrates the following values or behavior: Be yourself. Be real and sincere. Be honest with yourself and your clients. Don't be patronizing or condescending. Keep the client's agenda in focus. Don't pursue your own agenda or inflict yourself on others. Don't be defensive. Know your own strengths and weaknesses. Strive towards achieving openness and self-acceptance because these qualities will enable you to accept people whose behavior conflicts with your own personal values. Remember that it is impossible to hide negative feelings from clients. No matter how hard you try to conceal them, clients will sense your incongruence. When clients react negatively or criticize you, examine the behavior that might have caused clients to think negatively. 3. Empowerment and self-responsibility You must have the desire to empower clients to take responsibility for themselves and to identify, develop and use available resources that will make them more effective agents of change in counseling sessions as well as in their everyday lives. The empowerment of clients should be based on the following values: Accept the principle that the client knows himself or herself better than anyone else, and that he or she is therefore in the best position to explore, expose and understand the self. Believe in the clients' ability to change if they choose to do so. Trust clients‘ ability to manage their lives more effectively. It is the task of the counselor to help clients to identify and use their resources. Refrain from ―rescuing‖ the client. This means that you should not take responsibility for another person's feelings, choices or actions. Allow the client to take responsibility for him or herself. Help clients to perceive counseling sessions as work sessions. Only the client can make change happen. The counselor can merely make suggestions about how the client might change. Help clients to become better problem solvers in their daily lives. Basic communication skills Since counseling is a conversation or dialogue between the counselor and client, the counselor needs certain communication skills in order to facilitate change. The counselor needs the following basic communication skills to do effective counseling. 1. Confidentiality; always maintain the principle of non-negotiable. You may under no circumstances disclose the HIV status or any other information to anybody without the express permission of the client. Confidentiality is an expression of your respect for the client. 176 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives 2. Attending; refers to the ways in which you can be with your client, both physically and psychologically. Effective attending tells clients that you are with them and that they can share their world with you. Effective attending also puts you in a position to listen carefully to what your clients are saying. The acronym SOLER can be used to help you to show your inner attitudes and values of respect and genuineness towards a client. S: Squarely face your client. Adopt a bodily posture that indicates involvement with your client. (A more angled position may be preferable for some clients - as long as you pay attention to the client.) A desk between you and your client may, for instance, create a psychological barrier between you. O: Open posture. Ask yourself to what degree your posture communicates openness and availability to the client. Crossed legs and crossed arms may be interpreted as diminished involvement with the client or even unavailability or remoteness, while an open posture can be a sign that you are open to the client and to what he or she has to say. L: Lean toward the client (when appropriate) to show your involvement and interest. To lean back from your client may convey the opposite message. E: Eye contact with a client conveys the message that you are interested in what the client has to say. If you catch yourself looking away frequently, ask yourself why you are reluctant to get involved with this person or why you feel so uncomfortable in his or her presence. Be aware of the fact that direct eye contact is not regarded as acceptable in all cultures. R: Try to be relaxed or natural with the client. Do not fidget nervously or engage in distracting facial expressions. The client may begin to wonder what it is in himself or herself that makes you so nervous! Being relaxed means that you are comfortable with using your body as a vehicle of personal contact and expression and for putting the client at ease. Effective attending puts counselors in a position to listen carefully to what their clients are saying or not saying. 3. Listening; refers to your ability to capture and understand the messages clients communicate as they tell their stories, whether those messages are transmitted verbally or nonverbally. Active listening involves the following four skills: Listening to and understanding the client's verbal messages. When a client tells you his or her story, it usually comprises a mixture of experiences (what happened to him or her), behaviors (what the client did or failed to do), and affect (the feelings or emotions associated with the experiences and behavior). The counselor has to listen to the mix of experiences, behavior and feelings the client uses to describe his or her problem situation. Also ―hear‖ what the client is not saying. Listening to and interpreting the client's nonverbal messages. You should learn how to listen to and read nonverbal messages such as bodily behavior (posture, body movement and gestures), facial expressions (smiles, frowns, raised eyebrows, twisted lips), voice related behavior (tone, pitch, voice level, intensity, inflection, spacing of words, emphases, pauses, silences and fluency), observable physiological responses (quickened breathing, a temporary rash, blushing, paleness, pupil dilation), general appearance (grooming and dress), and physical appearance (fitness, height, weight, complexion). You need to learn how to ―read‖ these messages without distorting or over interpreting them. Listening to and understanding the client in context. The counselor should listen to the whole person in the context of his or her social settings. 177 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Listening with empathy. Empathetic listening involves attending, observing and listening (―being with‖) in such a way that the counselor develops an understanding of the client and his or her world. The counselor should put his or her own concerns aside to be fully ―with‖ their clients. Active listening is unfortunately not an easy skill to acquire. You should be aware of the following hindrances to effective listening: Inadequate listening: It is easy to be distracted from what other people are saying if one allows oneself to get lost in one's own thoughts or if one begins to think what one intends to say in reply. Counselors are also often distracted because they have problems of their own, feel ill, or because they become distracted by social and cultural differences between themselves and their clients. All these factors make it difficult to listen to and understand their clients. Evaluative listening: Most people listen evaluative to others. This means that they are judging and labeling what the other person is saying as either right/wrong, good/bad, acceptable/unacceptable, relevant/irrelevant etc. They then tend to respond evaluative as well. Filtered listening: We tend to listen to ourselves, other people and the world around us through biased (often prejudiced) filters. Filtered listening distorts our understanding of our clients. Labels as filters: Diagnostic labels can prevent you from really listening to your client. If you see a client as ―that women with AIDS‖, your ability to listen empathetically to her problems will be severely distorted and diminished. Fact centered rather than person centered listening: Asking only informational or factual questions won't solve the client's problems. Listen to the client's whole context and focus on themes and core messages. Rehearsing: If you mentally rehearse your answers, you are also not listening attentively. Counselors who listen carefully to the themes and core messages in a client's story always know how to respond. The response may not be a fluent, eloquent or ―practiced‖ one, but it will at least be sincere and appropriate. Sympathetic listening: Although sympathy has its place in human transactions, the ―use‖ of sympathy is limited in the helping relationship because it can distort the counselor‘s listening to the client's story. To sympathize with someone is to become that person's ―accomplice‖. Sympathy conveys pity and even complicity, and pity for the client can diminish the extent to which you can help the client. 4. Basic empathy Basic empathy involves listening to clients, understanding them and their concerns as best as you can, and communicating this understanding to them in such a way that they might understand themselves more fully and act on their understanding. To listen with empathy means that you must temporarily forget about your own frame of reference and try to see the client's world and the way the client sees him or herself as though you were seeing it through the eyes of the client. Empathy is thus the ability to recognize and acknowledge the feelings of another person without experiencing those same emotions. It is an attempt to understand the world of the client by temporarily ―stepping into his or her shoes‖. This understanding of the client's world must then be shared with the client in either a verbal or non-verbal way. 178 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Some of the stumbling blocks to effective empathy are: Avoid distracting questions. You may often ask questions to get more information from the client in order to pursue your own agendas. You can do this at the expense of the client, i.e. you ignore the feelings that the client expressed about his or her experiences. Avoid using clichés. Clichés are hollow, and they communicate the message to the client that his or her problems are not serious. Avoid saying: ―I know how you feel‖ because you don't. Empathy is not interpreting. You should respond to the client's feelings and should not distort the content of what the client is telling you. Although giving advice has its place in counseling, it should be used sparingly to honor the value of self-responsibility. To merely repeat what the client has said is not empathy but parroting. If you ―parrot‖ what the client said, do not understand the client, are not ―with‖ the client, and show no respect for the client. Empathy should always add something to the conversation. Empathy is not the same as sympathy. To sympathize with a client is to show pity, condolence and compassion - all well intentioned traits but not very helpful in counseling. Do not confront or argue with the client. 5. Probing or questioning Probing involves your statements and questions that enable the client to explore more fully any relevant issue of his life. Probes can take the form of statements, questions, requests, single word or phrases and non-verbal prompts. Probes or questions serve the following purposes: to encourage non-assertive or reluctant clients to tell their stories to help clients to remain focused on relevant and important issues to help clients to identify experiences, behaviors and feelings that give a fuller picture to their story, in other words, to fill in missing pieces of the picture to help clients to move forward in the helping process to help clients understand themselves and their problem situations more fully Keep the following in mind when you use probes or questions: Use questions with caution. Do not ask too many questions. They make clients feel ―grilled‖, and they often serve as fillers when counselors don't know what else to do. Do not ask a question if you do not really want to know the answer! If you ask two questions in a row, it is probably one question too much. Although close-ended questions have their place, avoid asking too many close-ended questions that begin with ―does‖, ―did‖, or ―is‖. Ask open-ended questions - that is, questions that require more than a simple yes or no answer. Start sentences with: ―how‖, ―tell me about‖, or ―what‖. Open-ended questions are non-threatening and they encourage description. 6. Summarizing it is sometimes useful to summarize what was said in a session so as to provide a focus to 179 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives what was previously discussed, and so as to challenge the client to move forward. Summaries are particularly helpful under the following circumstances: At the beginning of a new session. A summary of this point can give direction to clients who do not know where to start; it can prevent clients from merely repeating what they have already said, and it can pressure a client to move forwards. When a session seems to be going nowhere. In such circumstances, a summary may help to focus the client. When a client gets stuck. In such a situation, a summary may help to move the client forward so that he or she can investigate other parts of his or her story. 7. Integrating communication skills Communication skills should be integrated in a natural way in the counseling process. Continually attend and listen, and use a mix of empathy and probes to help the clients to come to grips with their problems. Which communication skills will be used and how they will be used depends on the client, the needs of the client and the problem situation. Counseling principles and procedures Help the survivor actualize the loss Help the survivor to identify and express feelings Assist living without the deceased Facilitate emotional relocation of the deceased Provide time to grieve Interpret ―normal‖ behavior Allow for individual and cultural differences Provide continuing support Examine defenses and coping styles Identify pathology and refer The impact of HIV infection on affected others can be summarized as follows: The significant others in an HIV positive person's life often need help themselves to come to terms with (1) their own fears and prejudices and (2) the implications and consequences of their loved one's sickness and ultimate death. The counselor can play a tremendous role in counseling the lovers, friends and family of the HIV-positive person in the practicalities of physical and emotional care. Affected significant others experience more or less the same psycho-social feelings as do their HIV-positive loved ones – the same feelings of depression, loneliness, fear, uncertainty, anxiety, anger, emotional numbness and, at times, hope. The impact summarized as: Affected others often experience fear and anxiety about their own risk of infection. They are often angry with the infected person for ―bringing this onto them‖. They anticipate the loss of the HIV-positive person and issues of loss, bereavement and uncertainty are introduced into the relationship. They often feel unable to cope with the new demands that the infection place on them. They feel incompetent, unqualified and powerless in their interaction with the HIVpositive significant other. Responses to disclosure can range from involvement, caring and support on the one hand, to abandonment, indifference, and antagonism on the other. 180 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Affected others suffer in many ways as a result of untimely deaths. People who die of AIDS are usually young (between 20 and 35 years old), and this leads to the ―unnatural‖ situation where parents outlive their children. Grandparents who are preparing themselves for a quiet and contented old age now often find themselves forced to nurse and care for sick and dying children as well as grandchildren. Children suffer tremendously when their parents are infected, and the needs of children with infected parents are often neglected. There is no tradition of talking to children as equals and on an intimate basis in many African societies, and caregivers often report seeing ―the suffering of children, who are too often hovering in the shadows of a sick room, seeing and hearing everything but never addressed directly‖. Significant others often have to fulfill a role for which they are not trained, namely that of caregiver. They have to look after serious ill loved ones. Neurological complications and deterioration in mental functioning in the client can be extremely disturbing to significant others. They may feel that they are already losing their loved ones and this can precipitate an early grieving process. Helping the client and significant others The main function is to be supportive of his or her infected and affected clients, to listen to their problems and empower them to solve self-problems and better their lives. 1. Support and empowerment Compile, with each client, a list of their problems, and let them reflect on what they want. Assist the client to identify possible solutions to these problems. Encourage clients to come up with their own solutions because clients will be more likely to implement solutions that they find feasible and practical. Ask the client to make a list of his or her good qualities and possible limitations. He or she should, for instance, list his or her coping skills, describe the level of his or her selfesteem, analyze his or her personality style, communication style, sense of humour - and any other strengths and weaknesses that may be important. Examine and discuss possible solutions to whatever problems the client may have identified. Assess each solution in terms of the client's actual capabilities and capacity. Refrain from giving advice and suggesting solutions. Ask the client to write down the answers to the following question: ―Why must I go on living?‖ Once this has been done, encourage him or her to work toward those goals and to make new and longer-term goals along the way. Clients should set goals that will give them a sense of purpose and pride (goals such as ―I want to see my children growing up‖). Identify the ways in which clients have dealt successfully with their problems in the past and help them (if necessary) to develop new coping skills. Empower clients to make their own decisions and to take control over their lives wherever and whenever possible. Make a note of any relationship problems between the client and his or her loved ones, friends and family, as well as between the client and other health providers. Encourage the client to call on peer support (buddy systems) or self-help groups. The counselor may also be able to put clients in touch with each other on an individual basis (with the consent of the individuals involved). 181 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives 2. Peer support (buddy system) Clients should be encouraged to become involved in support groups or to form their own groups if none exist in their communities. The following issues are usually dealt with in peer support groups: Learning to live with HIV infection. Many of the people involved in the peer support group, may have already gone through the process of living with HIV. They can describe the medical and psychological problems they have experienced and the interventions they found most useful. Helping caregivers and loved ones handle the daily pressure of caring for sick people. Reducing stress and avoiding conflict. Buddies can exchange practical advice on how to overcome anxiety, depression and other psychological problems that can lead to stress and conflict. Deciding how best to talk about HIV/AIDS to loved ones, friend and colleagues. Disclosing a diagnosis of HIV can be particularly stressful, and buddies can share ideas on what to say, to whom, when and how. Dealing with feelings of loneliness, depression, powerlessness and suicide. The peer support group can provide help and mutual support. Advice from people who have actually experienced those feelings personally and who have coped with them successfully is more valuable than theoretical information. Advice about sexual relations and the implications of safer sex behavior. Peer support groups can discuss all aspects of these problems and opportunities and give each other good advice about safer sex practices. Peer commitment to safer sex also helps to make these practices socially acceptable, attractive and sustainable. The key commandments of emotional support The eight commandments of emotional support include: Be non-judgemental Be empathetic Don‘t give advice Don‘t ask why Don‘t take responsibility for the other person‘s problems Don‘t interpret Stick with the here and now Deal with feelings first The counselor usually relies on the following guidelines in pre-test counseling: 1. Reasons for testing- a counselor will explore the reasons why the client needs to be tested: Is it for insurance purposes, because of anxiety about lifestyle, or because the client has been forced by somebody else to take the test? What particular behavior or symptoms are causing concern to the client? Has the client been tested before, and, if so, when? For what reason? And with what result? These questions provide you with an opportunity to ascertain the client‘s perceptions of his or her own high-risk behavior, and it allows the client to assess whether to be tested and whether their fears are realistic or unnecessarily concerned. The following are some of the reasons that clients who want to be tested often give: 182 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Their partner has requested it. They want to determine their HIV status before starting a new relationship. They want to be tested prior to being married. They feel guilty and concerned about having multiple sex partners. They have had recent sexual encounters in which they did not use condoms. They are manifesting symptoms that are giving them cause for concern. They have been referred by a STI or TB clinic because the client has tuberculosis or a sexually transmitted infection. They have come to re-confirm a positive HIV test. Their current partner is HIV positive, or they were once involved with a partner who was HIV positive. They plan to become pregnant and want to check their HIV status before they do so. They have been raped or assaulted. They need to be tested after an occupational exposure (e.g. a needle stick). There are simply curious. The reason why a client wants to be tested is important because it sets the scene for the rest of the pre-test counseling session. 2. Assessment of risk-assess the likelihood of whether the client has been exposed to HIV by considering how much and how frequently he has been exposed to the following risk factors and lifestyle indicators: What is your sexual risk history in terms of frequency and type of sexual behavior? Have you been involved in high-risk sexual practices such as vaginal or anal intercourse with more than one sex partner without the use of condoms? In the case of anal sex, was it anal-receptive or anal-insertive sex? Did you have sex with a sex worker (or prostitute) without a condom? Or is your sex partner HIV positive? Are there any other risks involved? Are you an intravenous drug user, a prisoner who is exposed to rape or unprotected sex in prison, a migrant worker, a refugee or a sex worker? Have you been raped or coerced to have sex with another person? Do you have another sexually transmitted infection or tuberculosis? Did you receive a blood transfusion or other body products? Have you been exposed to possibly non-sterile invasive procedures such as tattooing, piercing or traditional invasive procedures such as male or female circumcision and scarification for the application of medicines? Have you been exposed to HIV-infected blood in the work situation? (E.g. injuries with large volumes of blood involved, or needle stick injuries.) 3. Beliefs and knowledge about HIV infection and safer sex You will determine exactly what the client believes in and knows about HIV/ AIDS and correct errors or myths by providing accurate information about transmission and prevention. You may also ask about client‘s past and present sexual behavior and provide information about safer sex practices and a healthier lifestyle. Find out if the client knows how to practice safer sex and how to use a condom correctly. If available and necessary, you can also provide the client with condoms. Sex is natural and nothing to be ashamed 183 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives of. Feel free to ask these questions; because that is the only way you can empower the client with information to enjoy safe sex. 4. Information about the test-ensure that the client knows exactly what the HIV test entails. You will explain the following points to the client or to questions asked: There is a difference between being sero-positive and having AIDS. The HIV antibody test is not a ―test for AIDS‖. It indicates that a person has HIV antibodies in the blood and that the person is infected with HIV. It does not say when or how the infection occurred, or in what phase of infection the person is. The presence of HIV antibodies in the blood does not mean that the person is now immune to HIV. It means that he or she has been infected with HIV and that he or she can pass the virus on to others. The meaning of a positive and a negative test results. The meaning of the concept of the ―window period‖. The need for further testing will be emphasized if the person practices high-risk sexual behavior and tests negative. The reliability of the testing procedures. A positive HIV antibody test result is always confirmed with a second test and the reliability of test results is usually high. Falsepositive or false-negative results may, however, occasionally occur despite the general reliability of HIV tests (e.g. false negative tests result because the person is in the window period). The testing procedure. Many clinical centres use HIV antibody rapid tests, meaning that the finger will be pricked to get a drop of blood. The results are available within 15 to 30 minutes. The counselor will explain how blood is drawn for the Elisa test (if rapid testing is not available), where it is sent (if a rapid test is not used), when the results will be available and how the person will be informed of the outcome. 5. The implications of the result-discuss the possible personal, medical, social, psychological, ethical and legal implications of a positive test result with the client prior to testing. Inform the client about the advantages and disadvantages of testing. The following advantages can accrue from taking the test: Knowing the result may reduce the stress associated with uncertainty. One may begin to make rational plans for preparing oneself emotionally and spiritually to live with HIV. Symptoms can be confirmed, alleviated or treated. Prophylactic (preventative) treatment can be considered, for example for tuberculosis. Anti-retroviral treatment can be considered. Adjustments to one‘s lifestyle and sex life can protect oneself and one's sex partners from infection. One can make decisions about family planning and new sexual relationships. One can plan for future care of one‘s children. The disadvantages that might accrue from taking a test (especially if its result is positive) include: Possible limitations on life insurance and mortgages. Having to endure the social stigma associated with the disease. Possible problems in maintaining relationships and in making new friends. A possible refusal on the part of uninformed medical and dental personnel to treat an HIV-positive person. 184 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Possible dismissal from work (although it is illegal to dismiss people because they are HIV-positive). Possible rejection and discrimination by friends, family and colleagues. Emotional problems and a disintegration of one‘s life. Increased stress levels and uncertainty about the future. The stress and negative effects of maintaining a secret if the person decides not to disclose his or her test results. You can tell the client about medical treatments that are available which can help to keep him healthier for longer. 6. Anticipate the results-it is important to anticipate a positive HIV antibody result and to talk about how the client will deal with a positive test outcome. Anticipating a positive result helps you to ascertain the client's ability to deal with, and adjust to, a positive result. You will also gain insight into some of the potential problems associated with a positive test outcome. Preparation for the possibility of a positive test result, paves the way for more effective post-test counseling. When preparing a client for the test result, you should ask the following questions: How would you feel if you tested negative? How would you feel if the test were to be negative but you were advised to be tested again because you may still be in the window period? What would your reactions and feelings be to a positive test? Would a positive test change your life? How? What negative changes would you anticipate? What positive changes can you imagine? Do you intend to tell others if you test positive? Who would you tell? Why that person? How would you tell them? Why would you tell them? Clients must be warned about people‘s possible reactions. Often those closest to the client cannot cope with such news. The counselor must help clients to think not only of themselves but also of those who are to be told. (For example, if the client says to you: ―The news will surely kill my old and frail mother‖, you may ask: ―Why do you want your mother to know?‖). Clients must also be warned that some people may not keep the information to themselves, and that this might have harmful effects for the client. How would you tell your sexual partner? If the test result is positive, the sexual partner also needs to be tested. How would a positive test result change the circumstances of your job, your family and your relationships? Would your relationships be improved or hindered by telling people you were HIV positive? What do you believe their reactions would be? Where would you seek medical help? How do you feel about a disease that requires a lot of care, lifestyle changes, commitment and discipline? Do you have members of your family or friends who could help you to be disciplined about your health? Could you take medication every four hours if necessary? Who could provide (and is currently providing) emotional and social support (family, friends, others)? The choice to be tested remains the client‘s prerogative. The advantages of testing can be explained to clients, but clients should not be forced to be tested if they feel that they will not be able to deal with the results. The mere knowledge of people‘s HIV status will not necessarily protect them, or their loved ones, from infection. People who prefer not to be tested should, however, live as if they are infected and practice safer sex at all times. People who suspect they are HIV infected should also refrain from donating blood. 185 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives 7. Confidentiality of test results-always stress the confidentiality of test results. The client‘s right to confidentiality must be respected at all times. If individuals choose to remain anonymous, they must be reassured that no information will be communicated without their prior permission to anyone. The client‘s consent must be obtained before anyone can pass on any information about his or her HIV status to any other health care professional who also treats the client. If you explain why other health care professionals need to know about the client's HIV status, most clients will consent to this information being given out. 8. Informed consent-the decision to be tested can only be made by the client and their informed consent must be obtained prior to testing. Consenting to medical testing or treatment has two elements: information and permission. Before an HIV test can be done, the client must understand the nature of the test, and he/she must also give verbal or written permission to be tested. Never misled or deceive the client into consenting to an HIV test, it may lead to prosecution. You may not do an HIV test on a person unless he or she clearly understands what the purpose of the test is, what advantages or disadvantages of testing may hold for him or her as client, why the health care professional wants this information, what influence the result of such a test will have on his or her treatment, and how his or her medical protocol will be altered by this information. 9. Information about giving the results and ongoing support-explain to the client when, how and by whom the results of the test will be given. Assure the client with personal attention, privacy, confidentiality and ongoing support and advice if needed. 10. The waiting period-waiting for results of an HIV antibody test can be an extremely stressful period for the client. This waiting period (in cases where the rapid HIV antibody test is not being used) can last from two to 14 days, depending on where the test is done (whether by a private practice, a governmental health service or a rural clinic). The results of rapid HIV antibody tests are, of course, available within 30 minutes. However, if the client has to wait for the test results, anticipate this difficult waiting period by discussing the following points with the client: Find out the names of people whom the client might contact for moral support while he or she waits for the results. Encourage the client to contact you or a colleague if they have any questions. Counsel the client on how to protect sex partners (e.g. to use condoms) in the waiting period. Encourage the client to do something enjoyable to keep himself or herself occupied while waiting for the results (e.g. hiking, going to the movies or playing soccer with friends). Pre-HIV test counseling is extremely important. It should not only be seen as a preparation for the HIV test, but as a golden opportunity to educate people about HIV/AIDS and safer sex. Remember that this may be the one and only time that you will see the client because he or she might decide not to be tested, or not to come back for the test results after all. Posttest counseling Not many things in life could be as stressful as going back for HIV test results. For many clients it feels as if the counselor holds the key to the future in his or her hands. Although the post-HIV test counseling interview is separate from the pre-test counseling interview, it is inextricably linked to it. The pre-test counseling interview should have given the client a glimpse of what to expect in post-test counseling. 186 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Pre- and post-test counseling should preferably be done by the same person because the established relationship between the client and counselor provides a sense of continuity for the client. The counselor will also have a better idea of how to approach the post-test counseling because of what he or she experienced in the pre-test counseling. Counseling after testing will depend on the outcome of the test - which may be a negative result, a positive result or an inconclusive result. The counselor should always ask the client if he or she is prepared to receive the results. In the case of the rapid HIV antibody test - where the results are available within minutes - ask the client if he/she is ready to receive the results immediately. Some clients need time to prepare for the results. Counseling - Negative Results For both the client and the counselor, a negative result is a tremendous relief. A negative test result could however give someone, who is frequently involved in highrisk behavior, a false sense of security. It is therefore extremely important for the counselor to counsel HIV-negative clients in order to reduce the chances of future infection. Advice about risk reduction and safer sex must therefore be emphasized. If you practice high risk sex behavior and test negative, it does not mean that you are ―immune‖ to HIV and that precautions are therefore unnecessary. Nobody is immune to HIV and everyone risks being infected if they do not change their behavior. The possibility that the client is in the ―window period‖ or that the negative test result may be a false negative should also be pointed out. If there is concern about the HIV status of the person, he or she should return for a repeat test after about three months and ensure that appropriate precautions are taken in the meanwhile. Do not underestimate the extreme importance of counseling a client who might test HIV negative. This may be your only chance to talk to this person about his or her sexual practices, potential drug abuse and other risk behaviors, and to educate him or her about safer sex practices. Free condoms can be given out at this session together with advice on how to use them and where to get more when needed. Use this counseling session to prevent a future situation where somebody else has to give the client a positive HIV test result! Counseling after positive results to communicate a positive test result to a client is a huge responsibility. The way people react to test results depends to a large extent on how thoroughly the counselor has educated and prepared them both before and after the test. When a test is positive, the following guidelines for counseling may prove useful for counselors: 1. Sharing news with the client Positive (as well as negative) test results should be given to the client personally. Feedback should take place in a quiet, private environment and enough time should be allowed for discussion. The news of a positive result ought to be communicated openly, honestly and without fuss. Simple and straightforward language should be used. Do not give the individual false hopes and (alternatively) do not paint a hopeless scenario. Choose neutral words when conveying a positive HIV test result. Don‘t attach value to the news by saying ―I have bad news for you‖ - because such an attitude reflects 187 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives hopelessness in the mind of the counselor. Rather say: ―MR. Wan, the results of your HIV test came back, and you are HIV positive‖. A positive result is NOT a death sentence and the counselor‘s task is to convey optimism and hope. There are a few Don‘ts that we need to observe when sharing a positive HIV test result with a client. Don't lie or dodge the issue. Don‘t beat about the bush or use delaying tactics. Come to the point. Don't break the news in a corridor or any other public place. Don't give the impression of being rushed, distracted or distant. Don't interrupt or argue. Don't say that ―nothing can be done‖ because something can always be done to ease suffering. Don't react to anger with anger. Don't say ―I know how you feel‖ because you don't. Don't be afraid to admit ignorance if you don't know something. 2. Client reaction to a positive result Clients‘ responses to the news usually vary from one person to another, and may include shock, crying, agitation, stress, guilt, withdrawal, anger and outrage - some clients may even respond with relief. You should allow clients to deal with the news in their own way and give them the opportunity to express their feelings. Try to show empathy, warmth and caring. Maintain neutrality and respond professionally to outbursts. Don‘t show surprise or make value-laden comments such as ―There is no need to be upset with me!‖ Because the loss of health is bereavement, it manifests with all the components of denial, anger, bargaining, depression and acceptance. The counselor must respect the personal nature of an individual's feelings. 3. Responding to client needs People's needs, when they receive a positive result, vary, and you have to determine what those needs are and deal with them accordingly. Fear of pain and death are often the most serious and immediate problems and these can be dealt with in various ways. Talking to clients about their fears for the future is one of the most important therapeutic interventions that you can make. Often it is enough for you just to be ―there‖ for the client and to listen to him or her. One of the major concerns for HIV positive people is whom to tell about their condition and how to break the news. It is often helpful to use role-play situations in which the client can practice communicating the news to others. In responding to a client's needs, an attitude of non-judgmental empathic attentiveness is more important than doing or saying specific things. Listening is more important than talking; listening is more important than doing. 4. Crisis intervention 188 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Crisis intervention is often necessary after an HIV positive test result is given Make sure that the person has support after he or she leaves your office. A person in crisis should never be left alone: he or she should have somebody with whom to share the burden. Ask the client where he or she is going after leaving your office. Let the person think about and verbalize his or her plans for the next few hours. Although it is better for the client not to be alone, personal needs should be taken into consideration: Some people prefer to be alone and work through a crisis all by themselves. Be sensitive to the possibility of suicide. If the client shows any suicidal tendencies, emergency hospitalization should be arranged if a friend or family member cannot be with the client. Make sure that your client does not leave your office without support to help him or her through the first few days. Don‘t ever give an HIV-positive result on a Friday, because there are often no support systems available over weekends. 5. Follow-up visits When people hear that they are HIV positive, they usually experience so much stress that they absorb very little information. Follow-up visits are therefore necessary to give clients the opportunity to ask questions, talk about their fears and the various problems they encounter. Significant others, such as a lover, spouse or other members of the family may be included in the session. During follow-up visits, clients should be offered a choice concerning their treatment. If health care professionals are not in a position to do follow-up counseling, information about relevant health services should be given. If there is a concern that the person might not return for follow-up counseling, information about available medical treatments such as anti-retroviral therapy, treatment of opportunistic infections, and social services for financial and ongoing emotional support should be given. Give the client a handout with whatever relevant information that he or she may need (such as the telephone numbers and addresses of HIV/AIDS centers and other social services). 6. Support systems Find out what support systems are available to clients. Refer clients to support systems where people meet on a regular basis to talk about their difficulties or simply to relax and enjoy each other‘s company. Information about support systems such as the buddy system is usually available at the nearest AIDScentre or from the offices of NGOs (non-governmental organizations) who work in the community. 7. Advice about health and sexuality Convey information about safer sex, infection –re infection control, health care in general and measures to strengthen the immune system. 8. Medical check-ups 189 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Encourage clients to go for regular medical check-ups to their family doctor or health clinic. Infections and opportunistic diseases can be prevented if treated in time. Counseling indeterminate results In some cases an HIV test result can be ―inconclusive‖, meaning that the result is ambiguous or indeterminate, and it is not possible at that stage to say if a person is HIV positive or not. (Explanation: A test result may be inconclusive because the test is cross-reacting with a non-HIV protein or because there has been insufficient time for full sero-conversion to occur since the person was exposed to HIV.) When a test result is inconclusive, other testing methods may be used to try to achieve a reliable result. The test can also be repeated after two weeks. If it is still inconclusive, it should be repeated at three, six and 12 months. If it is still inconclusive after one year, it should be accepted that the person is not infected with HIV. Bereavement counseling The bereavement experienced by a person who has lost a loved one and the bereavement experienced by a terminally ill or dying person are very similar. Both people experience a grievous sense of loss: in the first case, one experiences the loss of a loved one, and in the second case, one experiences the loss of one‘s future, one‘s hopes, one‘s loved ones, one‘s health, selfesteem, well-being and one‘s dignity as a human being. In either case, people are confronted with their own mortality. Terminally ill persons are directly confronted by their own imminent death - the imminence of which becomes more pressing as the disease progresses – while persons who have lost a loved one are indirectly confronted with the possibility and spectacle of their own future death through the death of the loved one. It is therefore understandable that the process of bereavement is often very similar for both those who are dying and those who are forced to witness death.In all cases where HIV-infected person lead a relatively normal and healthy life for extended periods, the counselor needs to facilitate a process of reinvestment in life. This is also an important element in the counseling of a person who has lost or is in the process of losing a loved one. Bereaved people should actively work through their grief in their own time. Bereavement is a process that cannot be rushed. Stages of dying The common stages of counseling for a person likely dying of AIDS: Denial and isolation: In this stage, the person denies that death is really going to take place. This reaction is commonly associated with any kind of terminal illness. However, denial is usually only a temporary defense and is eventually replaced with increased awareness when the person is confronted with such matters as financial considerations, unfinished business and worry about surviving family members. Anger: The dying person realizes that denial can no longer be maintained, and very often, feelings of anger, resentment, rage and envy follow. In this stage, the dying person wonders “why” he has to die. It can be difficult to care for a person in this stage since the anger can be displaced and projected onto the nurses, social worker, doctor, family member, etc. or even God. The realization of loss becomes great, and those who symbolize life, energy, and competent functioning are especially salient targets of the dying person‘s resentment and jealousy. 190 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Bargaining: In this phase, the dying person develops the hope that death can somehow be postponed or delayed. Some persons enter into a bargaining or negotiation - often with God - as they try to delay their death. Psychologically the person is saying ―Yes me, but...” In exchange for a few more days, weeks, or months of life, the person promises to lead a reformed life dedicated to God or to the service of others. Depression: Here the dying person comes to accept the certainty of death. This can be evident in several ways. The dying person may become silent, may refuse visitors, and may spend much of the time crying or grieving. This behavior should be perceived as normal in these circumstances and is actually an effort to disconnect the self from all love objects. Efforts to cheer up the dying person at this stage should be discouraged, because the dying person has a need to contemplate impending death. Acceptance: The dying person develops a sense of peace; an acceptance of one‘s fate; and in many cases, develops a desire to be left alone. In this stage, feelings and physical pain may be virtually absent. This stage is the end of the dying struggle, the final resting stage before death. The four tasks of mourning 1. Accepting the reality of the loss: There are two aspects of death bereaved people must accept. The first one involves accepting that the person has died and will not come back. The second one involves facing the challenges of the realities of life, brought about by the loss of a loved one. 2. Experiencing the pain of grief: Everyone who loses someone they love experiences the pain of grief. Sometimes society pressurizes people who are in mourning to get on with their lives and not be preoccupied with the loss. This results in the bereaved feeling lonely, with no one to share the experiences - often complicating the grieving process. It is for this reason that the mental health provider must offer the bereaved a space to share their grief and to feel the pain. 3. Adjusting to an environment in which the deceased is missing: The bereaved can be assisted to living without the deceased person and to make decisions independently. 4. Emotionally relocating the loved one: The bereaved has to find a new place in his or her life for their lost loved one - a place that will allow him or her to move forward with life and form new relationships. Useful techniques in bereavement counseling Evocative language: You can use tough words to evoke language, e.g. ―your son is dead‖ versus ―you lost your son‖. This language will assist the client in perceiving the reality of the loss and can stimulate some of the painful feelings that need to be felt. Also speaking of the deceased in the past tense can be helpful. The use of symbols: You can ask clients to bring photos of the deceased to counseling sessions. This creates a sense of immediacy of the deceased and a concrete focus for talking to the deceased rather than talking about him/her. Letters written by the deceased can also be useful as well as audio/videotapes of the deceased. Articles of clothing and jewellery can also be used. The counselor needs to be sensitive to the client‘s culture of doing things and deal with what the client is comfortable with. 191 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Will making: You can ask the client to make a will to the deceased expressing thoughts and feelings. This can help take care of unfinished business by expressing things that need to be said to the deceased. Keeping a journal of one‘s grief experience or writing poetry can also facilitate the expression of feelings and lend personal meaning to the experience of loss. Drawing: You can ask the client to draw pictures that reflect his or her feelings as well as experiences held with the deceased. This works well with children, but can also be used with adults. Role playing: Assist the bereaved to role play various situations that they fear or feel awkward about, as one way to build coping skills. You can enter into the role play, either as a facilitator or to model possible new behaviors for the client. Cognitive restructuring: The underlying assumption of the cognitive restructuring technique is that our thoughts influence our feelings, particularly covert thoughts and self-talk that constantly goes on in our minds. By helping the client to identify these thoughts and reality test them for accuracy or overgeneralizations, the counselor can help to lessen the dysphoric feelings triggered by certain irrational thoughts such as ―no one will ever love me again‖. Memory book: One activity a bereaved family can do together is to make a memory book of the lost family member. This book can include stories about family events and snapshots, poems and drawings made by various family members, including children. This activity can help the family to reminisce and eventually to mourn a more realistic image of the dead person. In addition, children can go back to revisit this memory book in order to reintegrate the loss into their growing and changing lives. Directed imagery: Helping the person to imagine the deceased, either with their eyes closed or visualizing their presence in an empty chair and then encouraging them to say what they need to say to the deceased can be very powerful techniques. The power comes not from the imagery, but from being in the present and again, talking to the person, rather than talking about the person. The purpose of all these techniques is to encourage the fullest expression of thoughts and feelings regarding the loss, including regrets and disappointment. DOMESTIC VIOLENCE AND HIV Domestic violence can happen to anyone. It affects people regardless of age, race, gender, sexual orientation, education level, financial situation, or marital status. It is important to learn about how abuse happens, how to identify it, and how to end it or get away from it. It is important to remember that, if someone threatens you, it is NOT your fault. You deserve to be treated with respect and to be safe. Often, women who have been abused are humiliated to the point of believing that they deserve whatever abuse comes their way. This is NEVER true. Domestic violence occurs when a person you are dating, living with, or married to is repeatedly harmful or threatening to you - physically, sexually, verbally, emotionally, or financially. The person doing these things will often do them to gain or keep power and control. ―Intimate partner violence‖ is another term used to describe violence in which a current or former partner or spouse physically, sexually, or psychologically harms you. Domestic violence can take many forms. Such as: 192 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Verbal abuse (using words to put someone down or make them feel bad), threats, constant blame or criticism; all of these are emotionally abusive Mild physical harm – like pulling hair or twisting flesh Violent actions that leave marks – like hitting, slapping, pushing, beating, or throwing things Extreme violence using knives or guns Rape or sexual assault (being forced into sexual acts without your consent) Domestic violence often begins with threats or emotional abuse. While these harmful words or actions may or may not lead to actual physical harm, they can still be very upsetting and scary, and leave long-term emotional scars. While most domestic violence involves men assaulting women, it can also involve men assaulting their male partners, or women assaulting their male or female partners. Domestic violence can happen as often in same sex couples as it can in heterosexual couples. Women, HIV, and domestic violence Domestic violence occurs more often in relationships where there is a difference in power. Women living with someone who is larger or stronger than they are may feel physically afraid. Also, women usually earn less than men and are more likely to be financially dependent on others. If the person a woman lives with is the one who pays the bills and provides her with accommodation, the woman may feel afraid, less independent, and in less control. There are several ways in which domestic violence and HIV are connected for women. Women who are abused may not be comfortable asking their partner to use protection during sex. Similarly, women in abusive relationships may not be comfortable saying no to sex if their abusive partner refuses to use protection when asked. Lastly, forced sexual acts can cause cuts or scrapes that provides room for HIV to enter the body. All of these can put women at higher risk for HIV, and make living with HIV more difficult.In most cases, women with HIV have a history of being physically or sexually abused before finding out their HIV status. And a woman with a history of physical and/or sexual abuse is more likely to become HIV positive, especially if that abuse first started during childhood years. Childhood abuse is closely linked with later drug use, having multiple sexual partners, being with a male partner who is at a higher risk of HIV infection, and exchanging sex for drugs, money, or shelter. If a woman uses drugs, alcohol, or sex to escape the pain of prior abuse, she may be at increased risk of getting infected due to sharing needles and having unprotected sex. All of these factors place an abuse at a higher risk for getting HIV. Many women may be at risk of abuse or violence because they tell their partner or the person they live with about their HIV status. Most women with HIV are always physically harmed after their HIV diagnosis. Therefore, it is important to disclose your HIV status safely. Questions to Ask Yourself or Someone Who May Have Been Abused Sometimes it can be difficult to know if you or someone you know has been abused, because victims may confuse their partner‘s actions with a form of love or caring. This list of questions might help you or someone you know identify the abusive actions of a partner or someone else in the home: Do you ever feel unsafe at home? Have you ever felt threatened by your partner, ex-partner, or other person in your home? 193 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Are you in a relationship where you have been physically hurt? Has a partner, ex-partner, or person you lived with ever: Pushed, grabbed, slapped, choked, or kicked you? Forced you to have sex or made you do sexual things you did not want to do? Threatened to hurt you, your children, or someone close to you? Stopped, followed, or monitored you (this includes checking your daily movements, emails, phone calls, and texts)? Signs of violence in a Partner or Potential Partner While there may not be any one profile or way to identify someone who is an abuser, you may notice your partner acting in one or more of these ways. He/she may: Be overly jealous Have big mood swings Have an explosive temper Have low self-esteem Blame you for their own problems Use words to make you feel bad about yourself Try to control you Try to keep you from your family or friends Disclosing Safely Sadly, many women with HIV are sexually or physically assaulted soon after they disclose their HIV status. Try to decrease this risk with the following: Disclose in a semi-public place like a public park with many people around. Find a place that is private enough to have a conversation, but public enough to get help if you need it. Consider disclosing with a third person present, like a friend or a health care provider. Meet only in public with that person until you feel safe. Avoid exposing others to HIV without warning them ahead of time. The risk of violence may be greater if a person feels you knowingly put them at risk or lied to them. Decreasing Your Risk There are no guarantees, but you can help lower your risk for domestic violence: Most importantly, remember: if someone threatens you, it is NOT your fault. You deserve to be treated with respect and to be safe. Often, women who have been abused have been humiliated to the point that they believe that they deserve whatever abuse comes their way. This is NEVER true. Do your homework. To find out information on the person you are dating (such as if he or she has a violent criminal record), consider doing a background check. Keep in touch with people who support you. Whether it is family, friends, a support group, peer advocate/counselor, or health care provider, do not let your relationship with any one person keep you from staying in touch with others. Get help and support. If you have been physically or sexually abused in the past, it is important to get help from a mental health professional or a support group. Otherwise, the past may be more likely to repeat itself. 194 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Avoid entering an abusive relationship. Be aware of the warning signs of abuse (described above), when starting relationships. If you see warning signs, the best time to leave an abuser is the first time it happens. Stay informed. Learn all you can about domestic violence, even if you think you will never need to know about it. Break-ups Of course break-ups can be for reasons that have nothing to do with HIV but sometimes it does play a part, especially if you have been newly diagnosed, or if you were infected outside your relationship. There are plenty of reasons why a relationship might be kept going after it has run its course. An HIV negative partner might think that they cannot leave because: it would look like they were abandoning their partner the person living with HIV would be left without support when they needed it they would feel guilty or worry that their partner wouldn‘t find someone else As the HIV positive partner, you might stay because: you worry about not being able to find another relationship you might feel guilty at wanting to leave your partner It is never easy to end a relationship, and it can be especially difficult to leave one that involves domestic violence. The key is to have a safety plan. Stay safe. Leaving your partner or someone you live with can be upsetting to that person. Make your safety (and that of your children) your top priority. Be prepared. If you leave, do not forget your HIV drugs and any other medications you take, medical records, birth certificate, credit cards, checkbook, etc. Assume that anything you leave may end up in the dumpster or used to find you. It may help to leave an emergency kit with some of these items with a trusted friend, family member, or service provider. If you do not want to give the name of the person you are afraid of, you can put it in a sealed envelope and ask them to open it only if you disappear or turn up too injured to identify the person who hurt you. Document. Get medical attention if needed and get photos of any injuries that you sustained. Have photos signed and dated by medical or law enforcement personnel if possible. A friend or family member can also sign and date for future evidence. Get help. Do not try to do this alone. It may be awkward or embarrassing to reach out to others, but your health and life may be at risk. If you cannot seek help for yourself, think of those who love you and may depend on you. Go to friends, the police, family, an emergency room, or a local shelter. If you become a victim of domestic violence, always remember – it is not your fault. It can happen to anyone. Anyone who physically attacks another person is responsible for his or her actions. The most important thing is to get safe and stay safe. Everyone is capable of loving and being loved, no matter what their HIV status. If the main thing keeping two people together is guilt, pity or fear of loneliness this is not healthy for either partner. If you are unhappy with the relationship for whatever reason, the chances are your partner will be too sooner or later. Break-ups can be harder if there is bad feeling between you and it is important to try to respect and be honest with each other. Sometimes people try to disguise their true feelings and create situations that will mean the end of the relationship without taking responsibility.Some people physically or emotionally ‗disappear‘ or break one of the relationship‘s key rules knowing it will provoke the end. If your relationship ends you may feel 195 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives emotions like shock, fear, anger and sadness. This is normal and after the loss of your relationship you might go through a grieving process. There may be practical considerations during a break-up such as finances, property you jointly own and arrangements for children or pets. A better way to work through a relationship ending is to be direct and honest with your partner. This can be hard but a counselor can help you manage this. OPPORTUNISTIC INFECTIONS AND AIDS RELATED CANCERS 196 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives HIV weakens your immune system, leaving your body vulnerable to certain infections and cancers. Such infections are called "opportunistic" because they take the opportunity to attack the body when your immune system is weak. The cancers are called "AIDS related" because they appear mostly in people who have advanced, later-stage HIV infection, and known as AIDS. When you die of AIDS, you do not die from HIV itself. You die from opportunistic infections (or "OIs"). Often, people are infected with the OI long before they become infected with HIV. Their functioning immune system keeps the OI under control, so they do not have any symptoms of the infection. Once HIV damages their immune system enough, the OI becomes uncontrolled and makes them sick. If you have HIV, you can take antibiotics to prevent the OI from causing disease. For example, one common opportunistic infection is Pneumocystis jiroveci pneumonia (also called PCP). Most people already have the microbe that causes PCP in their body, but it does not make them sick. An HIV-positive person, however, may need to take antibiotics to keep from getting very sick. The significance for early diagnosis It is important to catch the early symptoms of OIs and AIDS-related cancers before they take hold in various organs of the body, such as the lungs and brain. The sooner your doctor can diagnose and treat the condition, the more likely to make a full recovery. This means you need to keep track of symptoms and report them to your doctor. The benefit of starting HIV medicines even at high CD4 cell counts--starting early may help prevent some damage that is irreversible and may reduce the risk of damage to organs like the brain, heart, and liver. If you have chosen not to start HIV medications, also, it is important to have your CD4 count checked every 3 to 4 months. OIs and AIDS-related cancers tend to occur more commonly in people with lower CD4 counts, and checking your CD4 cell count allows you to begin necessary prophylactic medications to reduce your risk of opportunistic infections like PCP and mycobacterium Avium and readdress HIV treatment. Some of the key infections include; Candidiasis (or thrush), is a fungal infection of the mouth or lungs. Most people already have the Candida fungus in their body, but the body keeps it in check. Someone whose immune system is weakened is more likely to develop problems. Some people show no symptoms, but for those who have them, symptoms can include: white patches on the tongue smooth red areas on the back of the tongue painful areas in the mouth changes in taste decreased appetite pain or difficulty swallowing yeast infection of the vagina (vaginal itching and white discharge) sensitivity to spicy foods Treatments for thrush include oral drugs (suspensions) that you swish around in your mouth and swallow as well as oral antifungal medications. If you are taking drugs for thrush or a yeast infection, be sure to: brush your teeth after each meal; rinse your mouth of all food before using either lozenges or suspension; 197 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Avoid hurting your mouth: use a soft toothbrush; avoid foods and drinks that are too hot or too spicy. Cervical cancer (for women), cervical cancer often is caused by the same virus that causes anal and genital warts. The virus is called human papilloma virus (or HPV). Safer sex may help reduce the risk of this infection, but many women who are infected with HPV never had genital warts. In the early stage, there are often no symptoms. Some women, however, may notice bleeding between their periods or spots of blood after sex. Women should get regular exams with pap smears to check for cervical cancer. Coccidioidomycosis, this is caused by a fungus present in soil. The fungus is inhaled from dust and dirt carried in the air or wind, rather than passed from person to person. Most people don't have symptoms. Others will feel like they have the flu, sometimes with chest pain and a cough. Infection can lead to meningitis, including headache, fever, and altered mental states. Treatment with antifungal drugs usually is given for life to prevent the infection from returning, even despite effective treatment with HIV medications. Sometimes surgery is required to remove infected tissue. The seriousness of the disease depends on what part or parts of the body the fungus has infected. Cryptococcosis, this fungus is present in soil, usually where there are bird droppings, particularly those of pigeons. It can be passed through the air or wind. It's important to avoid handling birds, including pets, and to avoid areas with lots of bird droppings. The fungus can infect different organs, such as the lung, heart, and central nervous system. Symptoms vary, depending on where the infection occurs. In the lung, for example, symptoms can include: Cough Fever Malaise shortness of breath This infection is very serious. It can lead to meningitis (infection around the brain) and pneumonia. Drugs are available to treat this infection but antibiotic treatment is necessary until the immune system has improved on HIV medications. Cryptosporidiosis, this parasite is found in the faeces of many animals, including humans. It can contaminate drinking water. To avoid infection from people, avoid contact with faeces (diapers, sex involving direct oral-anal contact). Try to avoid accidentally swallowing water when swimming in pools, rivers, or lakes. Do not drink from streams. Drink bottled water or use filters on tap water (look for "submicron" filters, which will filter out this parasite). Avoid eating raw oysters as they can carry eggs of cryptosporidia. Symptoms of this infection include: persistent watery diarrhea nausea vomiting abdominal pain cramping loss of appetite weight loss 198 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives The main treatment for cryptosporidiosis is effective HIV treatment. In conjunction with ART, treatment with antimicrobials can hasten clearance and improve resolution of diarrhea. Cytomegalovirus (CMV), cytomegalovirus (or CMV) is passed by close contact through sex and through saliva, urine, and other body fluids. It can be passed from mother to child during pregnancy and by breast-feeding. If you are not infected, safer sex may help prevent infection. Many people are infected with this virus, though they have no symptoms. In HIV-positive people, the infection can be extremely serious. Symptoms can include: blind spots in vision, loss of peripheral vision headache, difficulty concentrating, sleepiness mouth ulcers pain in the abdomen, bloody diarrhea shortness of breath lower back pain confusion, apathy, withdrawal, personality changes Drugs are available to keep symptoms of the infection under control. Anti-HIV drugs can improve the condition, too. If you haven't started taking drugs for HIV, it may be best to wait until you have been on treatment for CMV for a few weeks. Treatment can prevent further loss of vision but cannot reverse existing damage. If you experience any vision problems, tell your provider immediately. Herpes simplex virus, herpes simplex is caused by a virus. Symptoms include red, painful sores on the mouth ("fever blisters"), genitals, or anal area. Genital herpes is passed through sexual contact. Herpes on the mouth is easily spread through kissing. It can be spread to the genitals through oral sex. Although less common, the virus can be spread even if you don't have blisters. Safer sex can decrease the risk of infection. Drugs are available to help herpes blisters heal, but there's no cure. Outbreaks may occur periodically for the rest of your life. Suppressive therapy with daily antiviral treatment can help reduce the number of outbreaks. Herpes zoster (shingles), shingles is caused by a virus, the same one that causes chickenpox. People with shingles usually had chickenpox as a child, and shingles is caused by reactivation of the herpes virus. Symptoms can include: painful skin blisters on one side of the face or body some vision loss The skin blisters can be extremely painful. Treatment is available to help the blisters heal, but there is no cure of the underlying infection, which stays dormant in the body and can reactivate. Zoster can lead to painful nerve inflammation that persists after the skin rash has healed. Early treatment can help reduce the likelihood of long term nerve pain. Antibiotic ointments can help keep the infection from becoming super-infected. The skin rash should be kept covered until healed to prevent spreading the infection to those in close contact. Histoplasmosis, this infection is caused by a fungus present in the soil contaminated with bat or bird droppings. It gets in the air when the soil is disturbed, such as when people explore caves. It is not passed from person to person. Symptoms can include: 199 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Fever weight loss cough shortness of breath abdominal pain Histoplasmosis can be quite serious but is treatable with antibiotics, which need to be continued until the immune system has improved with HIV treatment. Long-term suppression with antibiotics may be required if the disease relapses. HIV dementia, Sometimes called "HIV encephalopathy" or "AIDS dementia," this disease is caused by HIV invading the brain. It is most common when the CD4 cell count has gotten very low. Symptoms can include: memory loss depressed mood unsteadiness when walking irritability apathy clumsiness shaky hands (poor handwriting) personality changes People who are affected need to have a strong support system. Friends, roommates, or family members can help make sure that HIV medications are taken on time, in the right combination, and at the right dose. If memory is poor, a person can use notes, calendars, and alarms to remember medicines, appointments, and other important events. It may even be prevented by using HIV drugs that cross into the blood. HIV wasting syndrome, wasting syndrome refers to unwanted weight loss that is equal to more than 10 per cent of their body weight. For a 150-kilograms man, this means a loss of 15 kilograms or more. Weight loss can result in loss of both fat and muscle. Once lost, the weight is difficult to regain. The condition can be caused by many things: HIV, inflammation, or opportunistic infections. The weight loss may be accompanied by low-grade fever, and sometimes diarrhoea. The person may get full easily, or have no appetite at all. The most important treatment for wasting syndrome is effective treatment of HIV with antiretroviral. In addition, the condition may be controlled, to some degree, by eating a good diet. A "good diet" for an HIV positive person may not be the low-fat, low-calorie diet recommended for healthy people. Compared with other people, you may need to take in more calories and protein to keep from losing muscle mass. To do this, you can add to your meals: peanut butter legumes (dried beans and peas) cheeses eggs instant breakfast drinks milkshakes sauces 200 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives You can also maintain or increase muscle mass through exercise, especially with progressive strength-building exercises. These include resistance and weight-lifting exercise. Isosporiasis, this condition is caused by a parasite found in faeces. It may contaminate food or drinking water. To avoid infection, do not drink water from rivers and streams. When appropriate, drink bottled water or use filters on tap water. Cook food thoroughly. Symptoms can include: stomach cramps watery diarrhea weight loss (which may be significant) weakness loss of appetite fever Rehydration and nutritional support are key components of treatment. Anti-parasitic drugs can treat the infection, but they may need to be taken for a long time to keep the parasite in check. Immune reconstitution with HIV treatment may help prevent relapse. Kaposi sarcoma, kaposi sarcoma (KS) is the most common cancer associated with HIV. This cancer is caused by the human herpes virus 8 (HHV-8). The virus can be spread by deep kissing, unprotected sex, and sharing needles. It also can be spread from mother to child. Symptoms include brown, purple, or pink lesions (or blotches) on the skin, usually on the arms and legs, neck or head, and sometimes in the mouth. KS can also affect the lungs and intestines and cause swelling in the legs. Sometimes there is tooth pain or tooth loss, weight loss, night sweats, or fever for longer than 2 weeks. HIV drugs can slow the growth of lesions, even reverse the condition itself. Other treatments for KS are meant to relieve symptoms and improve the appearance of the lesions. It's important that people with KS keep lesions clean. They should call their provider if the lesions are spreading, if swelling gets worse, or if they develop a cough, shortness of breath, or problems in the gut. Lymphomas, lymphomas associated with HIV include a large group of cancers that begin in the cells of the immune system. The cancers can spread to different parts of the body, such as the central nervous system, liver, bone marrow, and gastrointestinal tract. Symptoms depend on where the cancer resides. Treatment varies depending on the specific cancer, but can include radiation and chemotherapy. HIV drugs, by boosting the immune system, can help the body fight the cancer, too. Mycobacterium Avium Complex (MAC), this condition is caused by bacteria present everywhere in the environment--in soil, food and animals. It is difficult to avoid exposure because MAC is in so many places. In general, avoid handling soil, and carefully handle and prepare food. Symptoms of MAC can include: fever night sweats weight loss loss of appetite 201 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives chronic diarrhea weakness fatigue abdominal pain Pneumocystis pneumonia (PCP), any fungus found in many places in the environment causes this condition. Nearly two out of three children have been exposed to it by age 4. However, PCP rarely causes disease unless there are underlying problems with the immune system, like HIV. The fungus can affect many organs, the most common being the lung. Symptoms can include: Fever shortness of breath night sweats or fatigue dry cough Pneumonia, recurrent, bacterial pneumonia (often caused by Streptococcuspneumoniae or Haemophilusinfluenzae) can affect people whose immune systems are not weakened by HIV. Persons infected with HIV, however, are much more likely than people who are HIV negative to develop bacterial pneumonia. Fortunately, these pneumonias can be treated with available antibiotics. HIV-infected persons should receive a vaccine called the Pneumovax, to help prevent pneumonia caused by Streptococcus pneumonia. Salmonella Septicemia, Recurrent, salmonella is a bacteria often found in food such as undercooked poultry, eggs, and unpasteurized milk. It is also present in water, soil, kitchen surfaces, animal faeces, and raw meat and on certain animals, such as reptiles. Because of the risk of salmonella, reptiles are not recommended as pets for HIV infected patients, especially if their immune suppression is advanced. Symptoms can include: diarrhea fever Salmonella septicemia usually is treated with antibiotics. Drug therapy may be required for life to prevent relapses. Toxoplasmosis, the parasite that causes toxoplasmosis is found in almost all animals. Cats and birds are major sources of infection. Indoor cats pose less risk, but cats that are free of toxoplasmosis can go outside can carry it back in. Avoid cat faeces (use gloves to change litter). Avoid handling birds. Never eat undercooked meats, particularly pork or lamb. Symptoms can include: dull, constant headache changes in vision disorientation seizures Toxoplasmosis can be treated with antibiotics, which need to be continued until the immune system improves. If you are being treated for toxoplasmosis, see your doctor promptly if you develop a rash or if your symptoms worsen. Help your memory by posting reminder notes. Keep 202 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives keys, glasses, phone numbers, and other important items in the same place, so you can always find them. Keep a calendar of your appointments posted in a place you look at a lot, such as across from your favourite chair. Tuberculosis (TB), mycobacterium tuberculosis disease is caused by a bacteria passed through the air when someone coughs, sneezes, or talks. It is spread easily in closed-in places, such as low-income housing, shelters, and jails. Tuberculosis (TB) can occur early in the course of HIV infection, often when CD4 counts are slightly below normal. Symptoms can include fever, night sweats, weight loss, fatigue, loss of appetite, and coughing. TB can be prevented and usually is curable. If left untreated, it can kill. It is important that you take your TB medication exactly as prescribed (missed doses can result in the TB germ developing resistance to the drug). Some TB medications can damage your liver, but your liver usually recovers if the medications are stopped. If your skin or eyes turn yellow, or if your urine darkens to the colour of Coca-Cola while you are taking tuberculosis medications, see your doctor immediately. It could be a sign of liver damage. Many people who are exposed to TB do not develop active tuberculosis but have a small amount of TB in the body. If your provider diagnoses you with exposure to TB but not active TB, they may recommend treatment to reduce the likelihood of developing active disease. Forms of TB Not everyone infected with TB bacteria develops ―active‖ disease. Latent TB; most people with healthy immune systems can fight off TB bacteria, even after they breathe them in and are infected. People with latent or inactive TB have no symptoms. They neither feel sick nor spread the disease to other people. In some people, TB stays latent or inactive for their entire lives. But in other people, latent TB turns into active disease if their immune system is damaged or weakened, through things like HIV infection, cancer, or transplant surgery that requires taking drugs to suppress the immune system. Active TB; some people infected with TB develop active disease. Active TB usually causes symptoms like coughing and weight loss. People with active TB can spread it to others. Active TB may develop either soon after infection or years later when a person‘s immune system becomes weaker. The link between TB and HIV People with weakened immune systems are more likely to develop active TB disease. This includes people living with HIV, children, elderly people, and people who take drugs that suppress the immune system. People living with HIV are at least ten times more likely to develop active TB disease than HIV-negative people. You can develop active TB with any CD4 count. TB can worsen HIV disease progression. Having active TB disease while HIV + is an AIDS-defining condition. Worldwide, TB is the leading cause of death in HIV+ people. You must be screened every year for TB if you are HIV+ by having a skin or blood test. TB Symptoms After TB bacteria are inhaled, they settle in the lungs. People with healthy immune systems can usually fight the bacteria and keep it from multiplying. The immune system may build structures that wall off the bacteria. These structures can burst, leaving scars in the lungs. If a person‘s 203 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives immune system is too weak and the structures burst, the bacteria can get out and enter the bloodstream. Once in the bloodstream they travel to other parts of the body including the brain, kidneys, and bones. This is called ―extra pulmonary TB.‖ Extra pulmonary TB is more likely in people with advanced HIV disease. People with active TB disease may develop symptoms including: Cough lasting more than 2-3 weeks Coughing up sputum (phlegm) or blood Unexplained weight loss Fever or chills Night sweats Fatigue (unusual tiredness) Loss of appetite Chest pain Preventing TB TB is spread through the air when an infected person coughs, sneezes or spits. It usually takes a long time for TB transmission to occur. Family members of people with TB, people living in the same house, health-care workers, and people who live in residential facilities like homeless shelters and prisons are most likely to get TB. People with latent (not active) TB do not spread the disease. Once a person with active TB starts treatment, they usually cannot spread the disease after 2-3 weeks on treatment. People with active TB should be separated from others until they can no longer spread the disease. If you have TB or spend time around people with TB, wear a disposable face mask. Certain types of air filters can trap the TB bacteria, and ultraviolet light can kill it. Liver Cancer The increased risk for liver cancer among HIV+ people is strongly linked to infection with the hepatitis B and/or hepatitis C viruses (HBV and HCV, respectively). There is a direct link between having a low CD4 cell count and having an increased risk for liver cancer. Other factors involved in damaging the liver include opportunistic infections (e.g., Mycobacterium avium complex, tuberculosis, cytomegalovirus, and cryptosporidiosis), excessive alcohol and recreational drug use, and even some HIV drugs. Many people have no symptoms until the disease is very advanced: Weight loss Nausea and vomiting Upper belly pain Loss of appetite White, chalky stool Swelling of the belly Jaundice (yellowing of the eyes and/or skin) Lung Cancer Although lung cancer is not an AIDS-defining cancer, people living with HIV have a greater chance of developing lung cancer than HIV-negative people. This difference is likely due to the weakened immune systems of those living with HIV. Unfortunately, lung cancer is one of the deadliest cancers. An increased risk of developing lung cancer is also strongly tied to smoking. 204 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Both the duration (how long) and amount (how much or how many per day) of smoking contribute to the risk for lung cancer. Second-hand smoke exposure (breathing smoke in the environment) also contributes to an increased risk for lung cancer. The best way to prevent lung cancer is to avoid or stop smoking. Symptoms are: Cough, with or without phlegm or mucus Coughing up blood Shortness of breath Chest pain Fatigue Loss of appetite The significance of healthy bones Bones play several significant roles in your body. They support and help body movement. They protect the brain, heart, and other organs from injury. Bones also store minerals such as calcium and phosphorous. Bones are living tissue and change during your life. Every day, your body removes old bone and adds new bone in its place. In young people, more bone is added than removed.After age 30, more bone is removed than added. This makes the bones lighter and more fragile, putting you at greater risk for injury. Many people have weak bones and do not know it. This is because bone loss often happens over a long period of time and does not hurt. For many people, a broken bone is the first sign that their bones have weakened. Bone Loss and HIV Bone loss and weakened bones occur more often in people living with HIV positive. It could be due to HIV itself, HIV drugs, or HIV+ people getting older. There are three bone conditions to which HIV+ people are especially prone: 1. Osteopenia Osteopenia is caused by a loss of bone minerals that leads to lower-than-normal bone density. Most often, osteopenia has no symptoms. The only way to know if you have this condition is to get a bone density test done. If you do find you have osteopenia, there are things you can do to stop it and possibly even reverse it. Having osteopenia does not mean that you will definitely develop osteoporosis; however, it does mean that you are more likely to develop it. Although bone loss with osteopenia is generally less severe than with osteoporosis, it does indicate that bones are weaker and may be more likely to break. Osteoporosis is a more serious condition than osteopenia, and refers to a loss of bone density and bone mass. Over time, breaking down more bone than is put back causes lower bone density, also called bone mineral density, which means there are lower-than-normal levels of minerals in the bones. Bones become weak and are more likely to break. People with osteoporosis most often break bones in the wrist, spine, and hip. 205 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Osteonecrosis (avascular necrosis) Osteonecrosis means bone death. It is caused by a loss of blood supply to the bone. Osteonecrosis may cause pain at the affected joint. It usually affects the head of the femur, the ball-shaped part of the thigh bone that connects it to the hip. In addition to HIV and HIV drugs, there are other things that can put you at risk for bone disease: Risk factors you can control Diet: Getting too little calcium and vitamin D Exercise: Not exercising and not being active Low body weight: Being too thin Tobacco use: Smoking cigarettes Alcohol and coffee intake: Drinking a lot of alcohol and/or caffeine Testosterone levels: Low testosterone levels in men Menopause: Women lose bone due to hormone changes that happen after menopause. Risk factors you cannot control Age: Your chances of getting osteoporosis increase as you get older Gender: Women have a greater chance of getting osteoporosis Ethnicity: White and Asian women are at higher risk; Hispanic and African-American women are also at risk, but less so Diet and Healthy Bones Even though you cannot control all of the things that lead to bone disease, you can control your diet. The mineral calcium makes up a large part of your bones. This means that if you do not get enough calcium in your diet, your bones may get weaker. Calcium is found naturally in some foods, and it is added to others. Some foods that contain calcium are: Dairy products, including milk, yogurt, and cheese Soy products: tofu, tempeh, soy milk Seeds: sesame seeds, chia seeds, and flax seeds Dark leafy greens: spinach, kale, chard, collard greens, turnip greens Broccoli Beans: black beans, navy beans Dried fruits and nuts: figs, almonds, brazil nuts Oranges and orange juice (especially calcium-fortified orange juice) Salmon or sardines with the bones Most HIV positive people still need to take calcium pills every day even if their diet includes foods with calcium in them. A registered dietitian or other trained health care provider can help you decide if you should take calcium supplements. If you do take calcium supplements, it may be a good idea to take calcium pills with vitamin D in them, since your body cannot use calcium without vitamin D. Talk to your health care provider before taking any supplements and do not take more than these amounts unless instructed to by your health care provider. Exercise and Healthy Bones 206 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives If you do not have joint pain, it is important to exercise on a regular basis. When you exercise your muscles pull against your bones, which help keep them healthy and strong. The best kind of exercise to keep your bones strong is exercise that uses weight or resistance such as: Walking (you can use ankle weights) Working out with weights or weight machines Stair climbing Hiking Aerobics Jogging If you cannot do high-impact weight-bearing activities, try lower-impact ones. For example, try walking or stair climbing instead of jogging. If you have not exercised regularly for a while, check with your health care provider before beginning a new exercise program. Once you have your health care provider‘s approval, start your exercise routine slowly. Every two weeks make your routine five minutes longer. In the end, you should be working out three to seven times a week, about 20-60 minutes each time. Diet and exercise are best for keeping bone loss from occurring. They can also be helpful if you already have osteopenia or osteoporosis, but in some cases, your health care provider may also recommend treatment with medication. Protecting Your Bones HIV positive people need to be particularly careful about bone health. Speak to your health care provider and follow these steps to help protect your bones: Follow a diet with plenty of calcium and vitamin D Seek the advice of a registered dietitian if you need help choosing the right foods Take calcium supplements if needed (talk to your health care provider first) Ask your health care provider what exercises are safe for you, and start doing them Stop smoking and reduce your intake of caffeine and alcohol Tell your health care provider if you are experiencing joint pain, especially in the hip area Anemia Anemia is a medical condition that occurs when you have a lower than normal amount of red blood cells (RBCs) in your body. It can also happen if your hemoglobin (HGB) level is below normal. HGB is a protein that uses iron to carry oxygen. It is found in RBCs and gives blood its red color. HGB carries oxygen from the lungs to the rest of the body. Oxygen is necessary for the body to make energy and carry out all its functions. If you have anemia, your body does not carry enough oxygen in your blood. Anemia can be mild, moderate, or severe. It can also be temporary or a longer-lasting problem. With severe or long-lasting anemia, the lack of oxygen in the blood can damage the heart, brain, and other organs of the body. Very severe anemia can even cause death. The good news is, anemia can be identified and treated. Key Symptoms At first, anemia can be so mild that it goes unnoticed. Symptoms usually appear and get worse as the anemia gets worse. Symptoms can include: Severe fatigue (tiredness) Difficulty breathing; being short of breath Rapid heart rate Pale skin 207 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Decreased pinkness of the lips, gums, lining of the eyelids, nail beds, and palms Feeling cold Confusion or loss of concentration Dizziness or fainting Sadness or depression Causes of Anemia There are many possible causes of anemia, including: A shortage of iron, which is most commonly due to blood loss from heavy or long menstrual periods, frequent nosebleeds, or internal bleeding; referred to as ‗iron deficiency anemia‘ A shortage of B vitamins: a shortage of the vitamin B12 is referred to as ‗pernicious anemia;‘ a shortage of the B vitamin folic acid (folate) can also cause anemia HIV infection itself Many opportunistic infections (OIs) related to HIV disease Kidney or bone marrow damage Some thyroid conditions Some drugs that are commonly used to treat HIV and related infections Anemia and HIV Anemia is an additional problem for people living with HIV. Factors that are linked to a greater likelihood of anemia in HIV+ people include: Being a woman Having lower CD4 cell counts Having a higher viral load Poor nutrition: not eating enough of the right foods, or not taking in the nutrients of the foods eaten (malabsorption) Certain hepatitis C drugs Anemia is a common condition in HIV positive people, especially women. It can cause feelings of fatigue, lower your quality of life, and increase the chances that your HIV disease will get worse. If you are feeling tired for unexplained reasons or experiencing any of the other symptoms listed above, talk to your health care provider. He or she can run tests to determine if anemia is the problem. If so, your health care provider will look for the cause and suggest treatment options. Treating anemia improves the health and survival of HIV+ people. Lipodystrophy and body changes Lipodystrophy means abnormal fat changes. It is used to describe a number of changes in body fat that are experienced by many people living with HIV. Lipodystrophy can also include changes in fat and sugar levels in the blood of HIV positive people. There is no official definition of lipodystrophy in HIV; it is generally broken down into two categories: Body shape changes – Includes fat loss (lipoatrophy) and fat gain (lipoaccumulation or lipohypertrophy) or movement of fat from one area to another (redistribution) in particular areas of the body Metabolic complications – Includes increases in fats and sugars in the blood 208 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives HIV infected people can experience both body shape changes and metabolic complications. This is sometimes called lipodystrophy syndrome. Body Shape Changes Changes in the shape of your body can be caused by fat loss, fat build up, or fat redistribution. Fat loss may happen in the: Arms and legs (fat loss may cause veins to appear larger in the arms and legs) Buttocks Face (sunken cheeks) Fat build up may happen in the: Stomach Breasts Back of the neck (―buffalo hump‖) Round lumps of fat may appear under the skin (lipomas) In many cases, lipodystrophy affects men and women differently. Women are more likely to see fat gain in their breasts and stomachs while men are more likely to see fat loss in their legs, arms, buttocks, or faces. However, many men and women suffer from both symptoms. It is not clear why there might be differences based on sex. It may have something to do with hormones or with how men and women burn fat differently. Lipodystrophy can dramatically change your appearance. These changes can create feelings of poor self-image and low self-esteem. In some cases, you may want to stop taking your HIV drugs. Or you may put off HIV treatment due to fear of experiencing lipodystrophy symptoms. It is important that you talk to your health care provider if you are feeling this way so that you take the necessary steps to improve your health. Metabolic Complications Changes in fat (lipids) and sugar (glucose) in your blood are called metabolic complications and include: Increased lipids in your blood such as cholesterol and triglycerides (hyperlipidemia) Increased glucose levels (hyperglycemia) Insulin resistance or diabetes Increased lactic acid in your blood (lactic acidemia) Metabolic changes cannot be seen with the naked eye; they can only be confirmed through blood tests. Without treatment, they can cause serious long-term health problems. Increased levels of cholesterol and triglycerides can put you at a higher risk of developing heart disease or having a heart attack or stroke. Increased glucose and insulin levels greatly increase the chance of developing diabetes, a disease that can cause vision and kidney problems and may be life threatening. Increased lactic acid can lead to a rare but dangerous condition called lactic acidosis. Symptoms include nausea, vomiting, or stomach pain; feeling very weak and tired; and shortness of breath. It is important that you and your health care provider make sure you get regular lab tests to check for metabolic complications. Call your health care provider right away if you are experiencing symptoms of lactic acidosis. Causes of Lipodystrophy 209 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives The exact causes of lipodystrophy are still unknown. There are different causes for different symptoms, but some causes are related to Antiretroviral drugs such as; Fat loss Fat gain Increased lipids Increased glucose levels, insulin resistance, and diabetes Lactic acidosis Not everyone taking HIV drugs develops body shape changes or problems with fat or sugar levels in the blood. Other factors that may cause lipodystrophy include: Starting HIV treatment with lower CD4 cell counts Starting HIV treatment at an older age Being on an HIV drug regimen(the longer the time on the regimen the higher the risk) HIV itself Cigarette smoking Fat loss Switching or avoiding some drugs: The results of switching drugs may be uncertain and can take some time; you and your health care provider may decide that changing medications is not right for you. Be sure to talk with your health care provider before stopping or switching any medications. Injections, implants, and plastic surgery: Some people have procedures done to restore fullness in the face. Injections of fat or synthetic fat substitutes can fill out sunken cheeks, as can cosmetic cheek implants. If you are considering plastic surgery, research the options carefully. Some treatments are short-term, can be very expensive, and do not work for everyone. It is important to consult with a plastic surgeon or dermatologist experienced in treating HIV-related lipodystrophy. Fat gain Human growth hormone (HGH): HGH may decrease excess fat build up in the stomach; however, it can also cause fat loss in the arms, legs, or face. Liposuction: Liposuction is a plastic surgery procedure that can be used to remove fat from the back of the neck and around the breasts, but not usually in the stomach (since fat gain caused by lipodystrophy in this area is deep, internal fat). Liposuction tends to be a temporary solution and the removed fat frequently returns. Increased lipids: ARVs also determine the level of lipids in the body. Switching HIV drugs: There are some HIV drugs that have less of an impact on cholesterol and triglycerides. Lipid-lowering medications: Certain drugs are available for reducing lipid levels. Some lipid-lowering medications interact with HIV drugs, so it is important for a health care provider to review all your medications before prescribing anything. Increased glucose levels, insulin resistance, and diabetes Switching HIV drugs: Switching to other HIV drugs may reduce glucose levels. Speak to your health care provider about this option before stopping any medications. Medications: There are a variety of drugs that can be used to treat these conditions; talk to your health care provider about which ones might be right for you. 210 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Diet and physical activity: Increasing physical activity and improving your diet may help with all of the symptoms of lipodystrophy. Physical activity can help reduce fat gain, build muscle, and reduce elevated lipid and glucose levels. Reducing the amount of saturated fats you eat may help reduce cholesterol levels. Saturated fats are found in animal products. Reducing the amount of fats and carbohydrates you eat may help reduce triglyceride levels. More fiber in the diet helps to control insulin resistance and help decrease stomach fat. While there is no definite proof that these methods improve lipodystrophy, there is no down side to eating right and exercising. It is a good idea to speak with a nutritionist or dietician about the steps you can take to improve your diet and level of physical activity. If you are experiencing lipodystrophy, it is important to take care of your body. Keep all of your appointments with your health care provider, get regular lab tests, and tell your provider about any changes in the way you feel or in your body shape. Recording body measurements and weight on a regular basis, whether or not you are taking HIV medications, may give you valuable information down the road.Some of these body shape changes and metabolic problems are linked with heart disease and strokes in HIV positive people, so make sure you are checked regularly. Other factors, such as high blood pressure, may also contribute to the risk of heart attacks and strokes and need to be treated. You can also support your body, and especially your heart, with a healthy diet, regular physical activity, and stopping smoking.Even though the physical changes of lipodystrophy can cause emotional distress, it is not advisable if you have lipodystrophy to stop taking your HIV drugs. If you are concerned about your appearance, talk to your health care provider about treatment options. There are many things that you can do to stay healthy and feel good about your body. Lactic acidosis Mitochondria are small organs inside our cells. They help convert energy in the food we eat into energy our body uses to function. Like solar cells that convert sunlight into electricity, mitochondria are intracellular power plants that convert glucose (sugar) into usable energy. At the same time, lactic acid is made as a waste product. Normally, the body breaks down lactic acid and gets rid of it. Certain HIV drugs sometimes have negative side effects that may lead to liver problems. One such side effect is mitochondrial toxicity. In mitochondrial toxicity, the mitochondria are damaged and lactic acid is not broken down. This can cause levels of lactic acid to rise. When higher than normal levels of lactate build up in your blood, this is called hyperlactatemia. The body can often cope with hyperlactatemia. If the levels of lactic acid become too high, a rare, but serious condition called lactic acidosis can occur.Lactic acidosis can develop when your cells make too much lactic acid or when your liver is not working properly to get rid of it. Certain HIV drugs can sometimes cause these problems: Cells make too much lactic acid: Some HIV drugs can damage the mitochondria. This is known as mitochondrial toxicity. It can cause the mitochondria to have trouble making energy. Lactic acid is made by cells that are not getting enough energy from their mitochondria. The liver not working properly: HIV drugs can also cause the liver to become fatty, a condition called hepatic steatosis. A fatty liver does not work well and cannot break down lactate efficiently. Lactic acidosis is a rare side effect of HIV drugs. 211 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Symptoms of Lactic Acidosis The symptoms of lactic acidosis include: Persistent nausea, vomiting, and abdominal pain Unexplained tiredness Shortness of breath Rapid breathing Enlarged or tender liver Cold or blue hands and feet Abnormal heart beat Weight loss It is important to get in touch with your health care provider right away if you experience these symptoms. Because lactic acidosis can be fatal, it is best to identify and treat it early. Because there is a connection between liver problems and lactic acidosis, it is important that your health care provider check your liver function while you are taking HIV drugs, especially if you have a history of heavy alcohol use or a liver problem.Many people on HIV drugs have elevated lactate levels. It usually does not cause any problems. For that reason, lactate tests should not be done on a regular basis. However, if you experience any of the symptoms of lactic acidosis described above, tell your health care provider immediately. Although lactic acidosis can be lifethreatening, it is also very rare. The point of learning about lactic acidosis is not to scare you. Rather, it is to help you be aware of important signs in your body that may indicate a serious problem. In this way, you will be better able to recognize symptoms of lactic acidosis, tell your health care provider right away, and get treatment if necessary. Peripheral Neuropathy Many people living with HIV develop problems that involve the nervous system. The nervous system controls thinking, movement, sensations, and feelings. There are two parts of the nervous system: the brain and spinal cord (central nervous system) and the peripheral nerves (peripheral nervous system). The peripheral nerves run through the body like webbing, connecting all the parts of the body to the brain and spinal cord. Any disorder or problem involving damage to the peripheral nerves is called peripheral neuropathy or PN. The most common peripheral neuropathy is called distal symmetric polyneuropathy (DSP). This is what most HIV positive people always talk about when they say they have neuropathy. Most health care providers know it as a ‗sock and glove‘ nerve problem, because the area‘s most affected are where you wear your socks and gloves. Causes of PN The causes of PN are also related to either HIV, or drugs that are toxic to the nervous system (neurotoxic drugs), or a combination of both may cause the damage to the peripheral nerves.PN happens when the nerves between the feet and/or hands and the spinal cord become damaged. Like frayed wires that can spark or misfire, these damaged nerves do not send their electrical signals properly. As a result, PN can cause feelings of numbness, tingling, burning, itching, or shooting pain. Some people with PN describe their pain as ―holding a lit match to my feet,‖ or ―walking on broken glass.‖ This chronic pain can lead those who suffer to become isolated, depressed, and even suicidal. 212 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives There are certain risk factors for PN: Low CD4 cell count Older age (greater than 50) Medical conditions (for example, diabetes) Alcoholism Vitamin B12 deficiency Neurotoxic drugs (see below) Signs of PN include: Tingling Pins and needles Numbness Itching Feet feeling like they are asleep Stumbling when you walk Feet throbbing or cramping at night Sudden sharp shooting pains It may be easy for you or your health care provider to overlook slight or occasional sensations like the ones listed above. Do not ignore these symptoms, as they may get worse. If you have any of these symptoms, talk to your health care provider right away so that you can receive early diagnosis and treatment. Your health care provider will examine you and ask questions about your symptoms, medications and supplements, work environment, exposure to toxins, history of alcohol use, and family history of neurological disease. Usually, PN is diagnosed based on signs and symptoms of your report. However, your health care provider may also order tests to determine the type and extent of nerve damage. Blood tests to rule out other potential causes of PN are most common. If your symptoms are unusual, your provider may refer you to a neurologist, who may suggest nerve conduction velocity (NCV) testing or electromyography (EMG) for further evaluation. NCV looks at the speed of the signals your nerves send, and EMG looks at whether your muscle can respond normally to an electrical signal from a nerve. Other types of sensory testing and skin biopsies are generally used in research. Removing the cause It is important to maintain your HIV drug regimen so that your viral load stays low and your CD4 count remains high. This way, you can minimize HIV‘s effect on your nervous system. If you are on a drug, talk to your health care provider about stopping or switching the drug. If you decide to stop or switch a drug, it may take six to eight weeks for the PN symptoms to decrease. If the symptoms continue, the PN could be due to HIV. AIMS for PN The easy way to remember the keys to early diagnosis, treatment and management of PN is to think about the AIMS: Awareness – Take time to notice what your body feels like and how you move. Information - Never stop asking questions, reading, trying new drugs, therapies, or tools. Medical Team – Choose health care providers who are knowledgeable about HIV and neurological problems, willing to listen and answer your questions. 213 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Support – Finding support is critical. Peer organizations or local HIV support groups can offset the sense of helplessness and isolation felt by many people who experience chronic pain. Talking with peers can give you an opportunity to share your frustrations and successes with those who understand what you are going through. CRIMINALISING HIV TRANSMISSION As you live with HIV, preventing others from becoming infected with the virus that you carry is a primary concern. If you are infected with HIV you are, after all, only too aware of just how difficult it can be to live with the illness, and why would you wish it on anybody else. This said, not all HIV positive people take the precautions that they perhaps should.Scare scenarios of people 'deliberately' or 'recklessly' transmitting HIV to others continue to appear in the media since, and some of the individuals concerned are criminally charged and imprisoned for their actions. But while at first it might seem obvious to prosecute someone for recklessly or intentionally infecting another with an ultimately fatal virus, this assumption, and its consequences, can present numerous problems. So what are the issues that must be addressed when prosecuting someone for transmitting HIV? Is it right to try and criminalize HIV positive people in this way? Intentional, reckless or accidental transmission Before looking at the complexities of prosecuting people for infecting others with HIV, it is first necessary to understand the different types of transmission that can take place. The definitions below are based on general categories and are not specific to any particular country or legal system. Intentional transmission Intentional (or deliberate or willful) transmission is the most serious form of criminal transmission. Some individuals (both HIV positive and HIV negative) use needles or other implements to intentionally infect others with HIV. Others are based on HIV positive people who have sex with the primary intent of transmitting the virus to their partner. Intentional transmission also takes place when a negative partner has an active desire to become infected with HIV. However, this should not lead to prosecution especially if both parties consent. Reckless transmission This is where HIV is transmitted through a careless rather than deliberate act. If for example a person who knows they have HIV has unprotected sex with a negative person, but fails to inform them of the risk involved, this could be classed as reckless transmission in court. "Reckless" here implies that transmission took place as part of the pursuit of sexual gratification rather than because the HIV positive person intended to give their partner HIV (HIV is of course not 'automatically' transmitted every time someone has unprotected sex). Accidental transmission This is the most common way that HIV is passed on. A person is generally said to have accidentally transmitted HIV if: 214 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives They were unaware that they had the virus, and therefore did not feel the need to take measures to protect their partner. They were aware of their HIV positive status and they used a condom during sex, but the condom failed in some way. Complexities of prosecution Unfortunately deciding if someone has intentionally, recklessly or accidentally transmitted HIV is not as simple as the explanations above may suggest. The divisions between each of the three categories can be very blurred, and depend largely on individual interpretation. Even after a decision has been made on what grounds to prosecute, a court may still have a hard time deciding whether to find someone guilty or not. Some of the most problematic issues include; Proof It might appear that proof is a straightforward issue, but proving that an individual has transmitted HIV is exceedingly difficult. Firstly it needs to be proven that the accused (let's call them A) was definitely the source of the accuser's (B)-infected with HIV. This involves a wide range of evidence including sexual history, testing history and scientific evidence in the form of phylogenetics. It compares the DNA of the virus that A and B are infected with. If they are completely different then it means B almost certainly does not acquire HIV from A, and the case should probably be thrown out. If the strains are very similar, however, it is possible, though not conclusive, that A infected B. Phylogenetics cannot reliably estimate the direction of transmission and therefore it is possible that B infected A.Furthermore, both could have been infected by the same third party, or different third parties who shared similar strains of HIV. Due to its shortcomings, phylogenetic evidence should only be considered in the context of all other evidence. There different ways two people, 'A' and 'B', could be infected with a similar strain of HIV. Often, the only definitive proof would be a negative test on B that was performed after A received a positive test. Even so, if the complainant had had multiple sexual partners, pinning responsibility on a particular individual is very difficult. In cases where intentional transmission needs to be proven, evidence needs to be found that A actively intended and wanted to infect B. Unless there is physical proof of this (e.g. a syringe filled with HIV positive material, a note, or a written confession), it can often just be one person's word against another. With cases of sexual transmission, proving intention can be virtually impossible as the very nature of sexual transmission means there are no witnesses: what happens in the bedroom is essentially private. If no evidence of intentional transmission is found therefore, a charge of reckless or careless transmission should probably be chosen. Consent and disclosure Almost all criminal convictions involving sexual transmission are brought about because an HIV positive person has failed to inform their negative partner about their status. In some cases, the 215 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives positive person may have actively lied in response to a direct question in order to persuade their partner to have unprotected sex. In others, they may simply not have mentioned their status. A prosecution involving deception should carry a more severe penalty than a simple failure to disclose, because it affects a person's choice to consent to sex. Consent is an important issue in all criminal prosecutions. If the accused simply does not mention they are HIV positive, then the prosecution can probably argue that they had been reckless by not disclosing their status and not informing their partner of the risks involved in intercourse. However, the defense can well counter this by saying that the balance of responsibility is 50:50, and that by agreeing to having unprotected sex, the ‗victim‘ effectively consented to all the risks involved, including that of HIV. If the accused had actively deceived their partner, and told them they were negative when they were not, then the prosecution can quite easily argue that the 50:50 balance of responsibility had been taken away, making the accused more liable to prosecution. The argument that non-disclosure equals guilt can potentially even be applied if the person on trial used a condom. Sex with a condom, but without disclosure of status should also count as reckless transmission. This is because condoms are not always 100% effective. If a condom fails, and an individual becomes infected with HIV, there is potential for that person to accuse their partner of being 'reckless' for having withheld information that may have influenced their decision to have sex. Assumed status and trust Disclosing one's HIV status to an intimate partner can be extremely difficult. Many people have difficulty coming to terms with having HIV and remain in denial of their condition. The fear of rejection and stigma can also prevent people from being honest, particularly if they are worried about friends, colleagues or members of their family finding out. Likewise, asking about someone else's status can be hard because of the risk of offending them, or 'spoiling the moment'. In such circumstances, many people choose to make assumptions instead.Ironically, this is particularly true in high-prevalence areas or among high-risk groups where virtually everyone has heard of HIV. A positive person who engages in casual sex with a negative person may, for example, assume that by failing to suggest the use of a condom or failing to ask about status, the negative partner is either already positive themselves or does not care about the risks of HIV. Likewise, a negative person may assume that by not using a condom and not talking about status, their partner must be negative too: ―If she was HIV positive, she'd ask me to use a condom...‖ or ―He's not using a condom, so he must be HIV positive, like me‖ There is also the issue of trust. A relationship can only work if both partners have faith in each other to be honest and truthful. But when one partner consistently lies or deceives the other, where does the blame lie - with the person who has been deceptive, or with the person who has been naive enough to trust them? Police investigations If HIV transmission is an offence, then the police may assume that it is acceptable to fully investigate any HIV positive person about whom they receive a complaint. In some cases, this will involve actively raiding the accuser‘s home for evidence of HIV positive status or demanding medical records from HIV clinics. The police will be required to track down past partners to inform them of their risk, or even to persuade them to testify against the accused individual. How such activities fit in to national laws about privacy and confidentiality needs to be assessed very carefully, and HIV positive people need to be aware of their rights if ever they undergo such an investigation. It also needs to be made very clear who should be traced, which 216 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives previous partners should be contacted, and how this should be done to ensure proper counseling and help is provided. Questions about whether anyone has the right to trace and contact previous partners if the person concerned does not give consent for this to happen also need to be addressed. Reasons for prosecuting A person who knows that he or she is infected with HIV commits criminal transmission of HIV if he or she (1) engages in contact with another person involving the exposure of the body of one person to a bodily fluid of another in a manner that could result in HIV transmission; (2) transfers, donates or provides his or her blood, tissue, semen, organs or other potentially infectious body fluids for administration (e.g., transfusion) to another person, or (3) in any way transfers to another any nonsterile IV or intramuscular drug paraphernalia. The actual transmission of HIV is not a required element of this crime. It is an affirmative defense that the person exposed knew the infected person was infected with HIV, knew the action could result in infection, and consented with that knowledge. Sometimes a lack of knowledge regarding HIV-associated risk and what a prosecution may entail could lead to someone making a formal complaint before they later realize it is not in their interest to do so. An impulsive overreaction upon being diagnosed, due to a misunderstanding of transmission risk, or acting out of vengeance against a former partner following a bad break-up, for example, could lead someone in the heat of the moment to try and take legal action. Poor advice by solicitors/advocates or, as mentioned, police may encourage a complainant to believe they have a solid case when it is unlikely to lead to conviction. Furthermore, they may later doubt that the defendant was the source of their infection. Complainants may also be led to believe they are entitled to complete anonymity only to find their entire sexual history dragged publicly through the courts in a case that was unlikely to end in conviction anyway. Criminal prosecution: right or wrong? Given the ambiguities and difficulties outlined above, it is apparent that any form of legislation on the issue needs to be clear about what forms of transmission are and are not covered. There are generally three broad schools of thought on how this should work; No criminalization at all Criminal charges should never be brought for transmitting HIV, no matter what the circumstances. HIV is a virus that acts under its own rules of nature, and therefore the laws of man can not apply. Banning any prosecution for HIV transmission therefore makes the whole issue a lot simpler. If not, then this rule poses a threat to public health by leaving individuals who wish to do harm immune to prosecution. Criminalization for intentional transmission only By restricting the law to cases of intentional rather than reckless transmission, it greatly reduces the confusion amongst HIV positive people over what is legal and what is not. It also cuts down on the number of HIV positive people being criminalized unfairly, while allowing those who truly deserve prosecution to be brought to trial. In cases of reckless or accidental transmission, education and counseling is a more effective prevention method than imprisonment or fines. 217 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Criminalization for all forms of transmission As demonstrated, many countries now allow the prosecution of HIV-positive people for all forms of transmission, including reckless and accidental, and even for exposure where no transmission has taken place. Some have specific laws permitting this; others use more general criminal laws to obtain a conviction. As with any type of criminal trial, once one prosecution is successfully achieved, it sets a precedent for future trials, and makes lawyers more likely to take on similar cases. This growing trend is of particular concern especially for HIV positive people around the world. Below is a short summary of some of the arguments for the criminalization of HIV transmission, and the counter arguments against such legislation; procriminalization 1. If you are HIV positive, failing to use protection is wrong, and people who do wrong should be brought to justice through the law regardless of their health status or background. anti-criminalization Criminalizing HIV positive people does not address the complexities involved in disclosure and increases HIV stigma, particularly when positive people being brought to trial are demonized by the press. 2. Giving someone HIV is akin to murder. HIV is an unpleasant virus to live with, but it is no longer a death sentence, and with modern antiretroviral drugs, HIV positive people can live a healthy life for many years. 3. If you are HIV positive, it is your duty to use protection. The idea of 'shared responsibility' is based on ideals that came about when HIV was still a 'gay' illness. With heterosexual relationships, it is not always a practical reality. Many women now days do not necessarily have the power to force their partners to wear a condom. The more cases that come to court, the more people will believe that the responsibility for having safe sex should lie solely with positive people. This could in turn lead to more incidents of unprotected intercourse, with people believing it to be a legal responsibility for their partner to disclose any infection. Safe sex should always be a shared concern. 4. Criminalizing people for reckless transmission will act as a deterrent and will make HIV positive people think twice before having unprotected sex. The law has little effect on people's sexual behavior, as is clear from the number of teens who have illegal underage sex. Criminalization of transmission does however enable lovers to use the law as a 218 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives way of exacting revenge. In such cases, the original HIV positive partner would always be at a natural disadvantage. 5. To ensure that people do not believe they are immune from prosecution just because they have not taken an HIV test, it should be possible to call an HIV positive person 'reckless' even if they have never actually had an HIV test knowledge that they have put themselves at risk in the past should be enough to make them aware of their HIV risk and thus legally obliged to use a condom in the future. Prosecuting positive people for reckless transmission could well leave many afraid to be tested, believing that if they do find out their status, they could be liable to all sorts of criminal charges. Avoiding this problem by telling people they should be 'aware' of their risk even if they have not tested for HIV is entirely unfair. It is also impossible to assess or judge how 'aware' of past risk of infection any one person is or should have been. 6. Putting people in prison will stop them from In the short term, this may be true, but spreading HIV and endangering the community. imprisonment does nothing to help people come to terms with their HIV and take a safer attitude towards sex. Education and psychological counseling would be a more appropriate course of action in many cases. The sharing of needles for injecting drugs and the high incidence of male rape and sex between men in prisons also mean that HIV transmission is still perfectly possible, even behind bars. 7. Criminal cases help to uncover and warn lots Criminal cases give police license to of HIV positive people who might not otherwise investigate the background of anyone they learn their status. suspect of having passed on HIV. This can represent a serious invasion of privacy as well as a potential breach of confidentiality and anonymity, and it may well be entirely unjustified. 8. Laws on the transmission of diseases do not No other illnesses are treated with the same 219 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives necessarily apply just to HIV. Many laws hysteria as HIV, and few people are ever relating to HIV could potentially be used to criminalized for transmitting them. It is for prevent people spreading many other fatal example very unlikely that anyone would illnesses. think to prosecute an employee of a residential care home for coming into work with the flu and giving it to the residents, even if several of those residents subsequently died. HIV is only singled out in criminal cases because of its association with stigmatized groups and promiscuity. 9. HIV positive people can easily be divided into legal definitions of "guilty" (people who 'bring HIV upon themselves' and recklessly give it to others) and "innocent" (victims who were infected through no fault of their own, and would never put anyone else at risk). 10. Vulnerable women who do not have control over their sexual relations will find protection in laws that would prosecute reckless male partners. These categorizations are far from clear cut, and most HIV positive people have at some point in their lives belonged to both. After all, everyone who transmits HIV was once a 'victim' of someone else with the virus. Women will face a greater risk of prosecution as they more often know their status through attending health clinics more frequently. An HIV positive man may accuse his female partner of infecting him, because she was diagnosed first, even if he infected her and was not diagnosed until much later. The responsibility for protected sex is a shared responsibility, because criminalization increases HIV stigma. Criminalization is a step back towards the culture of ‗blame‘ that surrounds the early years of the epidemic. Right or wrong however, criminalization does mean there is now an extra concern for any HIV positive person who decides to have a sexual relationship. Criminalizing people who transmit HIV is both a moral and a practical minefield. The very fact that the sentences received by the individuals listed above vary from a small fine to life in prison reflects just how difficult it can be to legislate and deliver a ruling on an issue where individual viewpoints, emotions, stigma and the good of public health are so inextricably mixed. Assuredly, there is no evidence to suggest that criminalizing HIV transmission is an effective method to prevent the further spread of the virus or achieve criminal justice. If governments wish to make a dent in their countries‘ epidemic, far more effective prevention programs exist such as testing, counseling and general awareness campaigns. Where criminalization laws have been proposed as a means of protecting vulnerable women and girls from their HIV-positive partners, a more effective approach would be to address gender-related violence, inequality and sexual 220 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives coercion, as well as stigma and discrimination. While it is perhaps an understandable reaction on the part of individuals to want to seek redress through the courts for becoming infected, on an epidemic-wide scale criminalization could do more harm than good. The potential disincentive to testing, stigmatization of HIV, misapplication of the law, prosecuting people unaware of their status, as well as other possible pitfalls mean criminalization may be counterproductive. What should ultimately be remembered is that HIV is an infectious disease - every single person who is accused of transmitting the virus by whatever means, will at some point have been the victim of a 'transmitter' themselves. Replication and infection is the primary objective of any virus. The real criminal is perhaps not the human host therefore, but HIV itself. STARTING A SUPPORT GROUP Living with HIV can be very difficult. One thing that can be helpful is seeking the support of others living with HIV through support groups, peer counseling, or other tenable places. A support group is any group of people whose purpose is to support one another deal with an issue. A support group may be small (an informal gathering at someone's kitchen table) or large (a facilitated group at an AIDS organization or in a church meeting room). The participants can be from a specific part of the HIV community (e.g., HIV positive women, caregivers of those living 221 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives with HIV, members of a faith community), or they can be open to anyone who is interested in discussing about HIV. Some support groups are informal and led by the members themselves, while others are more formal and led by a trained facilitator. Some are general and provide opportunities for people to talk about anything on their minds, while others have a topic upon which they focus, such as HIV medications or how to deal with substance abuse issues. Some are "open" (members can join at any time or "drop in" as needed), while others are "closed" (requiring some sort of joining process and a commitment to attend regularly). Some groups get together just to share information and encouragement, while others grow into longer-term mutual support communities where members help each other with carpools, childcare, or care giving when a member gets sick. Still others grow into educational programs with outside speakers coming in to teach on various issues. There is no "right" or "wrong" way to organize a group, as long as it is safe, supportive, and respectful of all participants. People living with HIV who participate in support groups often take better care of themselves and are less likely to feel isolated or depressed. If there are no support groups available in your community, you may start one by yourself. The key issues for consideration include; Partnering If you partner with an organization in your area that provides services to HIV positive persons, it may be willing to tell its members about your group so that those who are interested can join. You can ask if organizations in your area already have a support group; if they do not, you can ask how they can help you start a group in your community. Purpose and Participants As you begin planning your group, consider the following: What is the purpose of the group? Possible purposes include providing social support, educational support, and/or mental health support. Who can participate in the group? Facilitator Next, decide who will facilitate (lead) the group. If you want to participate in the group that is easier to do if someone else is leading. Often, feelings that people have kept pent up or hidden inside will come out in a safe, supportive environment. Therefore, it is important to find a qualified person in the community (e.g., a mental health professional or someone experienced in leading support groups) who can assist with facilitating the group. Structure of Meetings Next, you can think about the structure of the meetings – will they be free flowing or have a set agenda? Ask the people who participate in the group to help make this decision. Having them choose the way the meetings are carried out can enhance their sense of ownership of the group. The more ownership HIV positive people have, the more likely you are to participate in the group. At the beginning of each session, the participants come with their ideas for various topics they would like to learn more about. The group then decides together which topics will be covered and which social events will be planned. Once these decisions are made, a calendar is created, and various participants volunteer to help arrange the events on the calendar. When new 222 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives participants attend the group, they are provided with what is going on. This process helps the core participants take ownership of the group and allows new participants to become familiar with the purpose, agenda, and structure of the group. Location and Organization Other questions to consider include: How often will the group meet? Where will the group meet? You can meet in person, or use the Internet to connect via online chartrooms (often called ‗peer support‘). What time will the group meet? Will the group be closed or open to new members? If closed, how often will it open to new members? Will the group run for a certain number of weeks or be ongoing? Will the group adopt rules and delegate responsibilities? Will there be a cost for participating in the activities? Will there be meals or snacks? Will incentives such as childcare, bus tokens, and/or grocery coupons be offered? Getting the Group Started It is important to ensure that your support group provides a space that is safe, confidential, and welcoming. Try to create a non-judgmental atmosphere where participants, both old and new, feel comfortable sharing their feelings. It can help to explain what confidentiality means to all members so that all participants have the same understanding and expectations for privacy.Sharing experiences allows members to give each other mutual support and to pool practical information and ways of coping. It also allows participants to understand themselves better through the insights of others. When a group is new, participation may be small. It is important not to be discouraged and to continue to meet as scheduled. The people especially residents of the community like yourself need to see that the group continues to meet. Besides, the ‗success‘ of a group is not based on how many people attend, but by the relationships that develop and support that is provided. If the group is open to new members, increase awareness by posting flyers at local organizations. Group name, meeting place, and meeting time are important facts to include. If a group is closed to keep it more confidential, then the name and number of the facilitator can be made available to local organizations for referrals. You may also want to talk to area case managers, attend local meetings, and keep in contact with other organizations in your area that serve HIV positive people. As the number of participants grows, it will be important to create some ground rules. It is often helpful if participants create these rules themselves. Ground rules are a way of establishing boundaries and keeping order in the group. If the rules are broken, it is important to remind the group of the rules that the group established, so as to provide a level of continuity and safety. Some common ground rules include: Expectations around confidentiality: ―what you say in the room, stays in the room;‖ anything said or noticed in the room will not be repeated or discussed at another time or place 223 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Openness and respect: group members are expected to listen to each other without interrupting, take turns speaking, and speak without judgment or giving advice; by the same token, choosing not to speak is also respected Language: Group members are expected to avoid language that would offend Promptness: Meetings will begin and end on time As the group grows, the different personalities of the participants and facilitator(s) may cause some tension or division. As the group organizer, it will be important to deal with issues as they arise. Try to stick to the rules and consequences the group created.There may come a time when the group process appears difficult and you want to quit. If that happens, try to reconnect with the reason you started the group and work out the difficulties so the group can continue. This may mean passing the organization or ‗ownership‘ of the group to someone else.Since being part of a support group is intended to help live healthier with HIV, it is fine to leave a group if it is no longer serving its purpose for you. There is power in a group. Through support groups, people have the opportunity to learn about HIV, provide support for other persons, develop leadership skills, set boundaries, gain respect, and grow their self-esteem and confidence. Through your group, people can learn that they are not alone – they have a family to support them as they live with HIV. 224 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives PASTORAL PERSPECTIVE ON HIV/AIDS One question we are most frequently asked is "How do we talk to or counsel a person living with AIDS?" This question is not only asked by care partners, friends, and family but also by church professionals, clergy and lay. Even though most religious professionals take some course(s) in theology, they often feel inadequate when it comes to providing emotional/spiritual support to individuals and families affected by AIDS. The spiritual needs of persons living with AIDS will never be more acute. HIV positive individuals live longer than any time in the past. Because they live longer, theydeal with longer-term stresses. Increasing numbers of family members and significant others opt to care for the infected individual and also need support themselves. More and more church and community members come out of the closet to let it be known that they or their loved one haveAIDS.Increasingly they seek out and even demand supportive, compassionate, and non- judgemental support from our religious communities. Key issues to consider while Giving Pastoral Care The First Question to Ask is Not, "How You Got the Infection?" We do not ask someone who has cancer, lupus, or suffered a heart attack how they got sick; so why should we ask that of someone with HIV? When someone tells us their HIV status, they are usually dealing with the present and future more than the past. There may be lifestyle issues that need to be discussed at a future time, but our initial reaction needs to be compassion-- not questioning. Avoid the "Blame Game." Spending time blaming people who are HIV positive for their illness distracts from the most important issues. The truth is that we have all done things in our life that involved risk. For the most part, we have been spared the consequences of those acts. We are hypocritical when we blame others if they suffer the consequences of their acts. The "blame game" prevents us from giving beneficial pastoral care to those who need it. Compassion is the Key. Compassion is being a channel of God's grace and coming to the side of one who is hurting. We suspend judgmentalism and focus on the needs of others. Compassion is shown in gentleness, kindness, acceptance, and love. Pastoral care that lacks compassion is not helpful. Compassion is the way of Jesus. 225 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Confront Your Own Fears. Fear leads some pastors and churches to reject people suffering from AIDS. They may refuse to visit or care for them. We must confront our fears with facts, put judgmentalism and prejudice behind us, and get on with the privilege and obligation of ministry. Focus on Life, Not Death. A person infected with HIV will eventually die. So will a person who is not infected by HIV. We shall all die and it is only a matter of time that counts; none of us knows when death will arrive. Therefore, our focus needs to be on how we will live the rest of our life. Focusing only on death gives the impression that we have given up hope and are just waiting for the person to die. Focusing on life declares that the person has a lot of living yet to do. Let the Individual Set the Agenda. Many of us like to be in control of everything, including the direction of our conversations. This approach can sabotage our best efforts. The earlier you are in relationship with the person you are counseling the more they need to control the issues that are discussed. If you begin a relationship by making demands of the HIV positive person such as his/her immediate repentance, notification of family/partner(s), and acceptance of death, you are being, at best, unfair and unhelpful. At worst, you are being destructive. Confidentiality is a Must. We must keep the trust people place in us. Disclosing one's HIV status is often a difficult decision. It means becoming vulnerable and trusting another with a secret. Pastoral visitors are not free to tell others secrets entrusted to us. We do not tell spouses, church committees, pastors, or friends. If we break confidentiality, we may hurt the one who trusted us so much that he/she never reaches out for help again. Act Like There is Hope. HIV is not a situation completely devoid of hope. New medications are extending the lives of persons infected with HIV. A cure may be in advance to arrival. There is the power of prayer. Most importantly, we all have much living left to do. The gospel of Jesus Christ is a call to hope that this life is meaningful because God is working in our life and eternity will be spent in the presence of God. Affirm the Worth of the Person. All people are created in the image of God. All people inherently have great dignity and eternal worth. God's grace has gone out to all people and God, calling all people to a life filled with power, love, joy, and service to others. "God so loved the world" (John 3:16) 226 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives means that there are no second class people. We must embody the message of love or we fail to offer the Gospel. Feel Free to Show Emotion. AIDS surfaces concerns about death, prolonged illness, lack of control of our lives, financial stability, transmission of the disease, prejudice, and more. Giving of good pastoral care requires that we confront these issues and get in touch with our own emotions about them. We must be careful, however, to respond to the needs of the person and not our own anxiety, fear, and pity. Our role is to be a pastor to them, not the reverse. Be emotionally present. Feel free to appropriately cry, laugh, or express other emotions when visiting a person who has HIV. Remember to Touch. One of the tragedies of HIV is that many people are reluctant to touch someone who is HIV positive. Some of this hesitation is due to irrational fears about contracting HIV through casual contact. Others hesitate because they do not accept the HIV positive person or the lifestyle they are believed to have. Whatever the reason, refusing to touch someone who wants to be touched sends the message that we are not emotionally present for the person or that we do not accept the person. (We must also be sensitive to times when a person does not want to be touched for any reason or cannot be touched because of a physical condition.) Our willingness to touch shows our willingness to care. Look for the Stages of Grief. People who are affected by HIV wrestle with the stages of grief. They deal with shock, denial, anger, bargaining, depression, and acceptance. People go through these stages in differing periods of time and may bounce back and forth between stages. People will grieve over their HIV status, an AIDS diagnosis, the loss of a job, becoming symptomatic, the loss of their future, the death of their friends, and the anticipation of their own death. Our job is not necessarily to move people through these stages but to help them deal with their present stage. We are called to offer support to our brothers and sisters during these difficult times. Be Aware of the Psychosocial Issues Surrounding HIV/AIDS. Those infected/affected with HIV deal with a variety of issues such as social isolation, rejection by friends and family, prolonged periods of illness, fear of what tomorrow will bring, then sometimes negative reactions of the religious community, reproductive decisions, guilt, and grieving. As givers of pastoral care, we need to recognize these issues and help people as they work their way through them. We also need to educate our community about HIV/AIDS so that it may respond supportively. Expressions of Spirituality and the Experience of Spiritual Life Varies from Person to Person. No one experiences God in the same way. Some people express their faith emotionally; others are quiet and contemplative. Some people enjoy singing; others prefer to listen. Some belong to a particular religious group; others do not. Some are very sure about their spiritual direction; others are searching and have a lot of questions. Such differences are 227 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives not bad. They demonstrate the unique way God reaches out to all of us. Since religious expressions differ, we must not require everyone to experience God the way that we do. We cannot assume that we know another person's spirituality just because we know they are affected by HIV. We must be present as pastoral guides who help people to find their own way on their spiritual journey. Avoid Saying, "I Know How You Feel." Even if we had similar situations, we cannot completely understand how anyone else is experiencing a particular situation. More helpful responses include, "I hear your pain"; "I am sorry"; "I am here for you"; "I understand this is a difficult time for you"; "What can I do to help?"; and "How do you feel?" Sometimes a quiet hug is appropriate and needed. Get Educated. To give helpful, consistent pastoral care, educate yourself about HIV. Learn the basic facts about modes of transmission, progression of the infection, common illnesses and medications, and the psychosocial issues that surround HIV/AIDS. Becoming educated about HIV communicates to people with HIV that you care about them. You can find out about HIV in many ways: books, tapes, seminars, volunteer opportunities, HIV/AIDS hotlines, hospitals, and more. However if you choose to become educated, do it today. Pastoral Care with a Person Infected/Affected by HIV/AIDS is Usually a Long Process. We cannot heal every wound and solve every problem in one hour. Pastoral care with someone whose life has been touched by HIV requires time, patience, and the development of a relationship. Our role is to come along side of people and support them, to be present with them. It is not to answer every question and give the solution to every problem. We must be patient as people work through the stages of grief and the myriad of issues that surround HIV. Know Your Limits. HIV brings us into contact with issues such as counseling, bio-ethics, living wills, medical treatment, grief, guilt, stress reduction, and nutrition. None of us can adequately deal with all of these issues. We must realize when we have reached our limits and be willing to refer the client to another person. Every Pastoral Care Situation Can Be Used by God to Make Us into the People God Wants Us to Be. God meets us in the people we encounter. People living with HIV, through the issues they raise, help us confront fear, death, frustration, impatience, prejudice, and spirituality. Walking through these issues with them can be mutually beneficial. We must always be open to growth and personal change. Doctrine, Dogma, Denominationalism, and Guidelines are Not Adequate Substitutes for Caring, Sharing, and Love. We all operate within the structure of a religious organization. That does not mean, however, that all we have to offer is that structure. We must add to that framework 228 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives caring, personal sharing, and love. Unless we become personally involved, we will fail to show God's love to others and fail to follow the example of Jesus. Ten assurances of pastoral care-HIV/AIDS Assurance 1: God Loves All of Us. God is love. God's love is extended to all people. It has no end and is unconditional. God's love has no "ifs, ands, or buts." No one and nothing can separate us from the love of God that is in Jesus. We are all precious to God. Jesus lived, died, and was raised from the dead in order to demonstrate God's love for us. Our love for God is demonstrated by our loyalty to Jesus and our love for one another. Even when we feel unloved or unlovable, God's love is constant. Even when we disappoint ourselves, God continues to love us. And some times, people turn away their love from us, but God's love for us never waivers. HIV often makes us feel separated from others-- our families, our friends, our partner, even God. The Scripture assures us that nothing can separate us from God's love-- not even HIV. In the midst of the challenges of HIV/AIDS, we can be assured that God still loves us. God accepts us right where we are. That does not mean that God approves of all we do or that God is willing to leave us just the way we are. It does mean that God's acceptance is unconditional. We are loved! Assurance 2: God Will Draw Near to Us. An affliction far more common than AIDS is "'FRAIDS," an irrational fear of HIV/AIDS and those infected/affected by HIV. This fear produces anger, discrimination, spreading of myths, 229 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives and avoidance of those infected/affected by HIV/AIDS. God does not have 'FRAIDS! God desires intimate contact with us. God wants to hear our concerns, fears, hopes, dreams, and questions. God wants to cry with us and laugh with us. God wants to hear our prayers and to talk with us. When HIV touches our life, we often experience the end of some relationships. Because we do not want to be hurt again, we can become reluctant to reach out to others. God wants us to take the chance and reach out. God will never hurt us. God will never turn away from us. God will not cut off our spiritual relationship with Jesus Christ. We can be sure that if we reach out to God, we will find that God is already reaching out to us. If we draw near to God, God will draw near to us. Assurance 3: God Offers Forgiveness. Guilt! We have all felt it. We have carried it around with us. We have been its victim. The good news is that God has provided a way for us to unload our burden of guilt. That way is God's forgiveness of our sins through Jesus.God's grace and forgiveness is greater than our sin. Forgiveness is God's work. Receiving God's forgiveness allows us to forgive ourselves for the mistakes we have made. It also allows us to forgive those who have hurt us. Letting go of guilt is a healthy choice. It frees up emotional energy for us to deal with the other issues of life. It liberates spiritual energy so that we can continue our spiritual journey. It releases physical energy so that we can keep our bodies healthier. Forgiveness also helps each of us to be honest with ourselves. We must admit that we are not perfect and that some things in our life must change. This admission helps us to stop wasting time. Then we can spend our time more constructively, doing the things that make us stronger. Forgiveness is a gift that truly is good for us. Assurance 4: God is with Us. When we are HIV positive, we can feel very isolated and lonely. We need to know that someone will be there for us, even in hard times of life. God will never desert us or leave us alone. Many things can make us feel isolated and alone. HIV/AIDS scares some people away from us. Sometimes HIV scares us away from other people.Managing our health, visiting doctors, and dealing with changing working conditions steals much of our time, thus often preventing us from spending time with others. God is with us, in good times or bad; in health or sickness; in strength or weakness. We may have to endure many things in this life, but we do not have to be lonely. God has promised to remain with us forever and ever-- in this life and in the next. We are not alone. Assurance 5: God Brings Good into Our Life. God does not make bad things happen to us. God does not make us sick. God brings good into our life. Bad things happen for a variety of reasons. We suffer because of the mistakes of others. We suffer because our decisions have brought negative consequences. We suffer because of the evil structures of society. Sometimes there is no satisfactory reason for our suffering. God promises to help us bring good results out of difficult situations. HIV has affected our lives. The question we must answer is, "How are we going to react to this reality of life?" We can choose to live in denial or face our mortality and be freed from the fear of death. We can choose to withdraw into ourselves or reach out to find the support we need and offer support to others. We can choose to run from God or to reach out and have a relationship with God who offers us goodness, love, and care. 230 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Assurance 6: God Gives Us a Purpose. One of the most terrible things is to live without purpose: to have no plans, no direction, no goals, no reason for living. To merely "exist" is a tragic way to spend our time when we could be living. When HIV touches our life, we may feel hopeless and want to stop living. We start to lose sight of our dreams and plans. We begin to believe that we have no purpose. That is not true! God affirms that we always have a purpose. As long as we are seeking to become better people, reach out to others, work on our spiritual growth, care and pray-- we have a purpose. How do we find our purpose? We can start by doing a self-inventory. We can ask: "What are my talents, resources, goals, hopes, and dreams? What is most important to me? How has God gifted me?" Next, we ask: "What are the needs of my family, friends, and society? What would God have me do about these needs?" Then, we ask: "Where does my self-inventory match up with the needs I see?" The intersection of or self-inventory and the needs of others may be a good place to begin fulfilling our purpose. God offers us life. God will give us a purpose. Let us be done with existing and get on with living! Assurance 7: God Gives Us Strength. All of us feel tired and overburdened sometimes. Demands related to friends, family, work, health can tire us out. Add the challenges of HIV to this mix and it is easy for us to reach the point of exhaustion. We may begin to believe that we cannot overcome the next difficulty we face. We find strength as we become connected to God through Jesus Christ.In this spiritual relationship, we find what we cannot find in ourselves. Our strength is not found in wrestling with life but in resting in God's hands. How reassuring to know that spiritual strength is promised to those who wait upon God. How empowering to realize that we can face all challenges backed by the power of God. Strength is not measured in weight, muscle size, or athletic ability. Strength is measured by our oneness with God. As our spiritual relationship becomes stronger, we become stronger people. God's strength will never fail us. Assurance 8: Peace, Hope, and Joy are God's Gifts. Beyond the materialism and selfishness of society (and ourselves), we need peace, hope, and joy. We feel these needs more intensely when our lives are touched by HIV. That we live in a disturbed world is not news to anyone. That we can find peace in the midst of it IS news. God offers us peace. We can have peace because we know we are God's. We know that justice will prevail. God never leaves us. Hope and HIV are not opposites. HIV affects the body but hope is found in the soul. We hope for a cure. We hope that we can fulfill our dreams. We hope that after taking the step of death, our story will not end. In fact, our hope says that our existence is eternal and that one day we will be in a place with no death, illness, or tears of pain. Scripture calls us to rejoice at all times. While we do not rejoice about the negative things in our life, we do rejoice that God goes through these things with us. We rejoice that the love in our hearts will last forever. We find joy in the faces of children, in the little things of life, and in the kindness of loved ones. Without peace, hope, and love, life is unbearable. With them, we can live and thrive. Assurance 9: God Takes the Side of the Poor, the Sick, and the Oppressed. God's love is extended to all people. God has a special concern for the persons who are poor, sick, and oppressed. Repeatedly Scripture defines true religion as caring for the poor, the 231 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives stranger, and the afflicted. Scripture condemns the actions of those who are unjust, abuse their positions of power, and close their eyes to the needs of others. HIV/AIDS increases poverty. Those who are poor become poorer. Many who have been financially comfortable become poor. Due to peoples' fears and unjust social structures, being infected/affected by HIV often results in oppression. God does not desire us to be in poverty, to be sick, or to be oppressed, but sometimes we are. God is not indifferent to our situation. God is our advocate, our comforter, and our refuge. God's will is justice for all. As The Reverend Dr. Martin Luther King, Jr. said, "even though the arc of the moral universe is long, it bends towards justice." The struggle may be long, but we do not struggle alone. God struggles alongside of us and on our behalf. We can take comfort in the knowledge that our situation is not forgotten by God. Jesus came to preach good news to the poor and set free the downtrodden. Assurance 10: God Never Gives Up on Us. People sometimes break their promises, destroying our faith in them. We may become so disappointed in the actions of others that we begin to give up on people. When the people who hurt us are members of the religious community, we are tempted to give up on religious institutions and people. We can even be tempted to give up on God.Some clergy and congregations fail to meet the needs of people. However, millions of people, including those whose lives have been touched by HIV/AIDS, have found parts of the Christian community to be very supportive. We all need spiritual moorings, to feel connected to something greater than ourselves. We all need to feel like we have a place in eternity. We want to experience love, peace, forgiveness, and hope. We lose all of these benefits if we react to the uncaring acts of others by shutting down our spiritual life. People sometimes fail us, but God will never. God is always greater than the people who claim God's name. Even if we have given up on people, we do not need to give up on God. God never gives up on us. Though we have experienced hatred and bigotry, we have also received a great deal of support and friendship from many people. Remember as children learning about Jesus ministering to the sick and lame... even to the lepers who were outcasts of society. People with AIDS are humans too. Like everyone else they have a need to be needed... to fit in. You may ask, "What can I do to help?" But the most important thing you can do is to be a friend. That may mean just going through life as usual, providing a shoulder to cry on, maybe a comforting hug, or maybe just simply being there. Treating those with HIV/AIDS with kindness and dignity is by far the greatest gift that can be given. The "Golden Rule" applies, "Do unto others as you would have them do unto you." HIV/AIDS: and GOD's judgment Is HIV, the human immunodeficiency virus, or AIDS, acquired immune deficiency syndrome, a punishment or judgment from God? The short answer is "No! Absolutely not!" Yet some people answer the question, "yes." Indeed, some members commonly known as the radical religious right praise God for the tragic epidemic which claims lives of hundreds and thousands of human beings in every part of the world. Because HIV/AIDS was associated in the first years of the epidemic with the gay male community in the western world, many from the radical religious 232 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives right use this pandemic as a weapon to further their own homophobic agendas. The idea that HIV/AIDS is a punishment from God is based on three faulty assumptions: that sexual immorality acts are sinful, that God causes suffering, and that God punishes sin with disease. These false assumptions result from a particular way of looking at society, sexuality, and how God works in the world. Does God Cause Suffering? Why do people suffer? All religions have had to address this question. The world is full of human suffering caused by hunger, disease, poverty, and multiple forms of oppression and injustice. If these things are happening, does this mean they are God's will and, therefore, God wills us to suffer? Evil is a very real force in this world, a force not of God's making. And HIV/AIDS is certainly a devastating evil not of God's will. It is not "just desserts" for gay men, commercial sex workers, babies born with HIV, IV drug users, or any other person living with HIV/AIDS. Jesus never punished people with sickness. Jesus healed. HIV/AIDS is a tragedy, and God suffers with us who are victimized by it or who lose our loved ones because of it. Bad things happen. You suffer many times through no fault of your own, but because the world can be an unfair, unjust place. God does not create chaos or injustice. God brings order out of chaos, and demands justice where there is injustice. God does not cause tragedy, but God does respond to suffering with healing. God heals sometimes through physical restoration, and other times with grace sufficient to grow in the midst of suffering, even in the face of death. An example of God's healing grace is welldescribed by a woman with a friend who died from the complications of AIDS: "As a child, he had been abused and abandoned by his mother. But as an adult, in his last months, his mother came to live with him, nursing him around the clock. In their times together, old wounds were healed, forgiveness was shared, and faith grew. My friend received a healing gift of family and love he had never known." Even when the injustice of tragedy invades our lives, God's passionate love can bring good in the form of healing and growth. You can find God's healing touch in your tears of sadness and your screams of anger. You can find God's healing touch in the words of love and comfort shared by others. More than anything, you can find God's healing touch through that inner peace that comes from God's presence and promises. In everything God works for good with those who love him. Is Sin Punished With Disease? "Is God punishing persons who practice sexual immorality with HIV/AIDS?" These are the kind of questions that were asked for centuries before HIV/AIDS became an issue. Each time some mysterious malady or disaster befalls on an identified community, there are claims that God has caused the disaster as a judgment against the affected person. If indeed HIV/AIDS is a plague sent by God into the immoral community, there are some flaws in the plan. There is the matter of all other people who are not immoralists who are infected and affected. For example, what is the explanation for the decimation caused by HIV/AIDS in children, where transmission is primarily vertical? Clearly there is no justification for suggesting that God has unfavorably judged the immoral community, nor that God has created HIV/AIDS as a punishment. Are all women with breast cancer victims of God's wrath? Are people of African descent being punished with sickle cell anemia? Have Palestinians done anything wrong to deserve Israel air strikes? It is known that HIV/AIDS disproportionately affected communities of colors in the United States. Does this mean that God had made a judgment against people of colors? A normal 233 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives person would answer these questions with a resounding ―No!‖People had similar questions during the time of Jesus Christ. Then, as now, many assume that suffering is a direct result of sin. But Christ challenged that assumption.As Jesus walked along, he saw a man who had been blind from birth. His disciples asked him, ―Rabbi, was it his sin or that of his parents that caused him to be blind? ―Neither,‖ answered Jesus, ―it was no sin, either of this man or of his parents. Rather it was to let God‘s work show forth in him.‖(John 9:1-3) Jesus then reached out to heal the blind man. You, too, must reject the idea that HIV/AIDS, or any other illness, is punishment for sin. People of faith, like that of Jesus Christ, must reach out with a healing touch. Rather than being understood as God‘s retribution, suffering becomes an occasion for God‘s love to be demonstrated. When you reach out and touch those with HIV/ AIDS, you can transform suffering into a living example of God‘s love. The Responsibility of a faithful Person While today's culture focuses on sin and evil as an individual matter, scriptures speak frequently of sin as something in which human beings are involved as a group. Similarly, evil happens in groups, in structures, and in forces beyond the individual. A faithful response to HIV/AIDS, then, needs to be a group response, as well as an individual one. Generally people have fears about HIV infection and disease. The personal fears are rooted in the fact that the disease is new, has no cure and is fatal. Death is a focal fear in HIV infection and disease. Other fears expressed are centered on stigma and rejection, dying and living ones children, going through a long painful period of multiple illnesses, being disfigured, being physically incapacitated and being impoverished, It is a fact that some people with AIDS die prematurely. It implies that one‘s ambitions in life are shattered causing frustrations and disappointment. Fears associated with AIDS are devastating emotionally to individuals infected and affected by HIV infection and disease such that they react differently on being associated with it. Most people experience shock on diagnosis. It is difficult for individuals to accept the diagnosis or the results and therefore there are tendencies to deny them. Feelings of regret, disappointment, frustration, blame, anger are usually manifested as a person adjusts to realities of being infected with HIV. As a result of these fears associated with AIDS, there are tendencies to seek for miraculous cures through witchcraft, turning to God/getting saved and having repeat tests. As individuals continue living with the infection, they develop feelings of desperation, helplessness, hopelessness, confusion, anxiety and depression as elaborated. These people need support in order to cope with the situation. In order to be of help especially to persons who are going through an emotional turmoil like in the case of HIV infection, a faithful person who can provide emotional support needs to have a positive attitude towards AIDS. S/he should be in position to show concern, willingness and interest in helping people with problems. A faithful person therefore needs to possess the following qualities: A good listener Patient Trustworthy Caring Kind and loving Approachable Empathy 234 Paul wanaye wamimbi-HIV/AIDS Publication-2015 Email: pwanaye@gmail.com, Cell phone: +256779064447. Sharing knowledge, saving lives Non-judgemental or neutral It is important for the person to seek fellowshipping in order to discuss any worries and problems that may arise. Fellowshipping involves the person sharing out his/her problems with any other person he confides in. Usually, a problem shared is a problem halved. Ventilating certain feelings like anger, fears, calms down the person and has a healing effect on him. Faithful individuals should take precautions not to use judgemental language. Prayers and praises should not relate to sorrow but should instill hope unless otherwise requested by the client. In addition the faithful person should not force his religious values on the client. Allowing a client with enough freedom is a vital step for prevention and elimination of this tragic disease. Jesus said, "The Truth shall set you free," and yet people often deny the truth, or avoid learning about HIV/AIDS because of fear. As a person of faith, it is your responsibility to educate them and all who can be reached. Many people have fears about the risks of contracting HIV/AIDS; that fear can be overcome with facts. With facts about how HIV is transmitted, people of faith can remain sex-positive while remaining HIV-negative.Following the example of Jesus, a person of faith is called to eat with people having AIDS, and to share his/her home with them; to touch people having AIDS and give them intimacy; and to heal people with AIDS. A faithful, intimate presence in the lives of those having HIV/AIDS, witnessing to them of Jesus' healing touch, is one of the most important responsibilities of all people of faith. 235
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