1. health and fitness
2. disease

2 0 1 2 Vo l u m e 2
PENNSYLVANIA
L
IN THIS ISSUE
CALENDAR OF
EVENTS
Page 2
LUPUS RESEARCH
INSTITUTE
Page 5
LIFE WITH LUPUS
Page 12
BRANCH NEWS
Page 14
COUNTY REPS
Page 18
SUPPORT GROUPS
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U
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The Newsletter of the Lupus Foundation of Pennsylvania
REDUCING LUPUS PAIN
WITH CHIROPRACTIC THERAPIES
By William P Marino, D.C. of Marino Chiropractic P.C. in Pittsburgh, PA
Joint and muscle pain, swelling, overall soreness
and stiffness; if you are a Lupus patient these
symptoms are well-known companions of your
life. You take your prescribed medication and
these provide some control of your disease, but
frequently, you feel little or no relief from your
pain and stiffness. Where do you turn?
Chiropractic care may not be the first thing that
comes to mind when one thinks of treating Lupus
symptoms; but if you think about the affects
Lupus has on the body it makes perfect sense.
Muscle and joint pain are the most common
complaints that patients present to a chiropractic
office and they are treated with a high degree of
success every day. Patients suffering from
Systemic Lupus often complain of nearly constant
joint pain and stiffness in the extremities and
spine with accompanying muscle discomfort.
Joint mobilization, myofascial release with soft
tissue therapies, moist heat, chiropractic
manipulative therapy and stretch therapy can
improve muscle function and decrease pain and
stiffness in joints.
Additionally, spinal
manipulation can
release compressed
nerves and will also
affect nerve impulses
to such organs as the
kidney and lungs.
Chiropractors are not
just “Back Doctors”;
they are
musculoskeletal
specialists who treat
all regions of the body
and pain at multiple
sites. Chiropractic is a
safe, natural, and effective way to combat the
chronic pain you live with everyday, and
unquestionably, with the increased discomfort
that often accompanies Lupus flairs. Chiropractic
treatments and techniques vary from one practice
to another, but some treatments are demonstrated
to be more successful in reducing the severity of
Lupus symptoms. Following are some of the
techniques a chiropractor may employ to resolve
your pain and accompanying symptoms during
treatments.
A chiropractic manipulation or adjustment is a
manual technique the doctor performs on the
spine or extremities to move restricted joints into
their proper place. Inflammatory responses,
tension, stress, chemical or even hormonal
imbalances can all contribute to the tightening of
muscles and the surrounding connective tissue;
when this occurs the joints can become locked or
immobile. The chiropractor will detect any
segment of joint restriction on exam, and will
then apply a gentle pressure to that joint segment
to release the restriction. Spinal manipulation
also works to restore healthy nervous function in
the body, which is soothing to Lupus sufferers,
especially those whose nervous systems are
particularly affected. Lupus patients frequently
experience muscle spams and inflammation,
particularly in the region of the lumbar (low back)
muscles, and flank, which lay over the kidneys.
Lupus flares can increase pain in the tissue
surrounding the kidneys and low back and these
muscles become very painful. Patients suffering
from these symptoms can similarly benefit from
this manipulative treatment. Gentle chiropractic
adjustments act to correct nerve interference or
pressure in the spine and tissue inflammations
and release of any restrictions or imbalances can
alleviate many pain symptoms.
Chiropractic manipulations are not limited to the
spine; chiropractors routinely adjust shoulders,
elbows, wrists, hands, and feet. These treatments
can be very beneficial to Lupus patients who have
Continued on page 3
2
LUPUS FOUNDATION
OF PENNSYLVANIA
Landmarks Building
100 West Station Square Drive
Pittsburgh, PA 15219
412-261-5886 • 1-800-800-5776
Fax: 412-261-5365
Email: info@lupuspa.org
Website: www.lupuspa.org
PRESIDENT
Donna Polito
VICE PRESIDENTS
Stephen Hutzelman, Esq.
SECRETARY
Gail Vandergrift
FINANCIAL CHAIR
John M. Yanak
BOARD OF DIRECTORS
Douglas C. Berlin Douglas Forrer
Melissa Franko Richard Grubb, Esq.
Thomas Kaplan Linda Kostyak PhD
Thomas Miller Judith Rienzi
MEDICAL ADVISORY COMMITTEE
David Helfrich, M.D., Chair
Sue Beers, Ph.D. Mark Cruciani, M.D.
David T. Francois, M.D. Theresa J. Fryer, M.D.
Eugene Grady, M.D. Howard Manasse, M.D.
Susan Manzi, M.D., MPH Allen J. Samuels M.D.
Robert G. Sanford, M.D. David C. Trostle, M.D.
EXECUTIVE DIRECTOR
Deborah Nigro
STAFF
Erie Branch
Jane Lippincott
Harrisburg Branch
Pittsburgh Branch
Marian Belotti
Nancy Mimless
Shelly Tonti
Pocono/NE Branch
Sarah Piccini
Cindy Savkov
US CONGRESSIONAL LUPUS
CAUCUS GROWING
Congressman Lynn Westmoreland, Georgia just joined the Congressional Lupus Caucus. As
a member of the caucus, Westmoreland will help educate Members of Congress on lupus.
The caucus focuses specifically on the effects the disease has on Americans, as well as supporting research advancements and increasing awareness.
CONGRESSIONAL LUPUS CAUCUS
CAUCUS CO-CHAIRS:
Representative Thomas J. Rooney (R-FL)
Representative Bill Keating (D-MA)
Representative Ileana Ros-Lehtinen (R-FL)
Representative Jim Moran (D-VA)
The Congressional Lupus Caucus was established to provide a forum for members of Congress and their staff to actively engage in a dialogue to improve the quality of life for people
with lupus and their caregivers through supporting the advancement of lupus research and
increasing awareness of lupus among the public and health professionals.
CAUCUS MEMBERS:
Rep. Michael Grimm (R-NY)
Rep. Edolphus Towns (D-NY)
Rep. C.W. Bill Young (R-FL)
Rep. Gregory Meeks (D-NY)
Rep. Lynn Jenkins (R-KS)
Rep. Ted Deutch (D-FL)
Rep. Hank Johnson (D-GA)
Rep. Joe Wilson (R-SC)
Rep. Lloyd Doggett (D-TX)
Rep. Jason Altmire (D-PA)
Rep. John Barrow (D-GA)
Rep. Jim Gerlach (R-PA)
Rep. Charles B. Rangel (D-NY)
Rep. Peter King (R-NY)
Rep. Gerald Connolly (D-VA)
Rep. Bill Posey (R-FL)
Rep. Sandy Levin (D-MI)
Rep. J. Randy Forbes (R-VA)
Rep. Tom Latham (R-IA)
Rep. John Yarmuth (D-KY)
Rep. Hansen Clarke (D-MI)
Rep. David Loebsack (D-IA)
Rep. Richard Hanna (R-NY)
Rep. Nita Lowey (D-NY)
Rep. Zoe Lofgren (D-CA)
Rep. Howard Berman (D-CA)
Rep. Louise Slaughter (D-NY)
Rep. Rush Holt (D-NJ)
Rep. Eliot Engel (D-NY)
Rep. Charles Bass (R-NH)
Rep. Susan Davis (D-CA)
Rep. Bob Filner (D-CA)
Rep. Kevin Yoder (R-KS)
Del. Madeleine Z. Bordallo (D-GU, AtLarge)
Rep. Tim Griffin (R-AR)
Rep. Chris Van Hollen (D-MD)
Rep. Maurice Hinchey (D-NY)
Rep. Steve Cohen (D-TN)
Rep. Henry Waxman (D-CA)
Rep. Leonard Boswell (D-IA)
Rep. Ann Marie Buerkle (R-NY)
Rep. Tom Cole (R-OK)
Rep. Mike Michaud (D-ME)
Rep. Darrell Issa (R-CA)
Rep. Donna Christensen (D-VI)
Rep. Blaine Luetkemeyer (R-MO)
Calendar of Events
The PA Lupus News, a publication of the Lupus Foundation of
Pennsylvania is published 3 times a year.
Editor: Marian Belotti
We welcome any subscriber who would like to contribute an article of
special interest.
Articles published in all newsletters are of an
informative nature and not meant for self diagnosis and/or treatment,
nor do they necessarily reflect the views of the Lupus Foundation of
Pennsylvania. Lupus varies among patients and medical management
must be individualized. If any article stimulates a quest for further
information, we advise that you consult with your personal physician.
January
6th 2013
Ski for Lupus Day
Elk Mountain
Spring
2013
Lupus LuncheonPittsburgh
Spring
2013
Lupus Spring Education SeminarPittsburgh
May
2013
Taming of the Wolf festivalConyngham
June
2013
Daisy Day Pocono
July
2013
Lupus Golf TournamentNevillewood
REDUCING LUPUS - Continued from page 1
extremity pain month after month. Often, one to three chiropractic
treatments, combined with simple exercises tailored to the specific
complaint will resolve the painful condition rapidly. Many Lupus
patients also experience headaches, as either a consequence of their
disease, or due their medications. Chiropractic adjustments of the
upper neck or jaw frequently alleviate, and in many cases, eliminate
these headaches.
Given that the origin of Lupus pain is different from most other
conditions presenting to a chiropractic office; the treatment for
Lupus patients’ must also be different and tailored to their specific
symptoms. Chiropractic adjustments are a very powerful tool in
pain management for Lupus patients, however; there will be days
when the prudent chiropractor should not adjust joints that are
extremely swollen or painful. When this happens chiropractors
may employ the use of stretching techniques, application of heat,
and soft tissue manipulation.
Lupus patients routinely suffer from inflammation of the tissue and
joints; and this is often exacerbated by fibromyalgia. Fibromyalgia
is very painful and can cause numerous tender points all over the
body. To resolve this distress, chiropractors typically employ soft
tissue techniques that are particularly beneficial to these patients:
trigger point therapy and myofascial release. Both the trigger point
therapy and myofascial release treatments are performed directly on
the skin with the hand, enabling the chiropractor to accurately
detect muscle or connective tissue inflammations or restrictions and
apply the appropriate amount of sustained pressure to facilitate pain
abatement and release. When the doctor performs trigger point
therapy, they will press their thumbs or fingers firmly into the
precise area of muscle pain. The myofascial technique is similar, but
here, the chiropractor uses gentle sustained pressure at an angle,
across the muscle, into the connective tissue restrictions to help
eliminate pain and restore motion. This treatment relaxes
contracted muscles, increases circulation and lymphatic drainage,
and stimulates the stretch reflex of muscles. Some chiropractors
will apply moist heat prior to manipulations or soft tissue therapies
as heat often facilitates relaxation of the muscles and joints and
dilation of the blood vessels, which renders the subsequent
treatments more comfortable for the patient.
A complementary therapy, which is a safe and very effective handson technique known as isokinetic stretch, is very helpful to Lupus
patients and also diminishes the ill effects of fibromyalgia by
restoring the flexibility and elasticity to the muscle and connective
tissue. With this therapy, the patient works in cooperation with the
doctor, and stretches their muscles and joints through their natural
range of motion. The chiropractor will then apply a gentle to
moderate force to stretch the areas further, in order to restore
movement and flexibility. These exercises are designed to provide a
specific and controlled level of resistance allowing a thorough
stretch to the patient without risking injury, while improving range
of motion and relieving soreness.
If stretching and deep soft tissue techniques are uncomfortable for
Lupus patients, chiropractors can also provide therapeutic
ultrasound or electric stimulation. Ultrasound is a gentle pulsation
delivered with an instrument that is applied to the skin, and breaks
up fibrous tissue and stimulates blood flow to the muscle. Electric
3
stimulation is a common therapy used in many offices and is also
applied to the skin. Electric stimulation can temporarily reduce
nerve pain and muscle aches. It is a non-evasive therapy in which
the doctor applies electrodes to the skin; the electric stimulation
machine then emits a safe, low impulse current which disrupts the
pain pathways, giving the patient relief for hours. This therapy can
bring significant pain relief to Lupus patients; however any
application of electric stimulation should be approved by your
Lupus physician or rheumatologist.
Since there’s no cure for
Lupus, most treatments
involve managing its
symptoms. Stretching and
chiropractic go hand in hand
in helping reduce the severity
of these symptoms. The
body is designed to move and
if we do not move our bodies
and stay active, the body will
respond in a negative way. A
sedentary life style produces
low energy levels, muscle
aches, muscle stiffness,
decreased flexibility, and weight gain. The cumulative effect of
these conditions can also begin to have an effect on the patient’s
mental health. Bad days become routine and the patient starts to
lose hope of ever feeling good again. A daily stretch, and later,
exercise regiment, are treatments that will reduce stress in the body,
and since times of stress can aggravate Lupus symptoms and cause
more frequent flare-ups, incorporation of stretching into your life is
key to managing your illness and feeling well again.
Before we discuss the mechanisms of stretching it should be noted
that your chiropractor should tailor a stretching regiment along
with your treatment in their office and always consult with your
Lupus doctor or rheumatologist before proceeding with chiropractic
therapies, stretch, and exercise programs.
Generally, a chiropractor should design a program that starts with
activities the patient is able to perform, and that considers their
personal level of fatigue. Stretching, ballet or Yoga-type warm-ups
are a good starting place because they increase mobility, provide
flexibility, and oxygenate the tissues. If your movements are limited
or you are extremely fatigued, even undemanding stretches,
executed while lying in bed or sitting in a chair, can help a Lupus
patient feel better and aid in controlling pain. Working with a
chiropractor to develop a successful treatment plan for Lupus
should focus on determining the possible causes of flare-ups,
treating symptoms when they do occur, as well as reducing
complications that may result from flare-ups or medical treatments.
Lupus can be crippling, but it doesn’t have to be. Chiropractic care is
one of many beneficial treatments available to help manage this
condition, and remember: small improvements can have a big
impact. The best treatments for Lupus involve dealing with the
individual, and chiropractic care recognizes that all symptoms of ill
health are expressions of disharmony within the whole person, and
that it is the person who needs treatment, not the disease.
4
Erie Branch
724-962-0368 or 866-292-1472
erieinfo@lupuspa.org
COUNTIES SERVED
Crawford • Elk • Erie • Forest • McKean • Mercer
Potter • Venango • Warren
Harrisburg Branch
218A W Governor Road
Hershey, PA 17033
717-533-0424 or 1-888-215-8787
hbginfo@lupuspa.org
COUNTIES SERVED
Adams • Berks • Columbia • Cumberland
Dauphin • Franklin • Fulton • Huntingdon
Juniata • Lancaster • Lebanon • Mifflin • Montour
Northumberland • Perry • Snyder • Union • York
Pittsburgh Branch
Landmarks Building,
100 West Station Square Drive
Pittsburgh, PA 15219
412-261-5886 or 1-800-800-5776
info@lupuspa.org
COUNTIES SERVED
Allegheny • Armstrong • Beaver • Bedford • Blair
Butler • Cambria • Cameron • Centre • Clarion
Clearfield • Clinton • Fayette • Greene • Indiana
Jefferson • Lawrence • Somerset • Washington
Westmoreland
Pocono/NE Branch
615 Jefferson Avenue
Scranton, PA 18510
570-558-2008 or 1-888-99-LUPUS
neinfo@lupuspa.org
COUNTIES SERVED
Bradford • Carbon • Lackawanna • Lehigh
Luzerne • Lycoming • Monroe • Northhampton
Pike • Schuylkill • Sullivan • Susquehanna • Tioga
Wayne • Wyoming
Meet the Newest addition to the
UPMC Lupus Center of Excellence
Dr. Daniel Kietz
and learn about the new
Adolescent to Adult Transitional
Care Clinic
Dr. Kietz grew up outside of
Frankfurt, Germany, and attended the Johann-Wolfgang
Goethe-Universitaet in
Frankfurt. He did his
residency in Medicine and
Pediatrics, and his fellowship in Adult and Pediatric
Rheumatology at St. Louis
University in St. Louis,
Missouri.
Dr. Kietz chose to study
Rheumatology because it
encompasses many of his
interests including; science
and academia, longitudinal
care (a comprehensive approach to the care and management of patients
over a long period of time), and the importance of the therapeutic
relationship between patient/ family and clinician.
Dr. Kietz also trained in dynamic psychotherapy and psychoanalysis at
the Pittsburgh Psychoalalytic Center. Dr. Kietz finds this extra experience helpful for patient care, communication and education in the medical setting. A complementary level of listening is added carefully paying
attention to and trying to understand the complexities of the mind and
mind-body interactions.
Dr. Kietz has been on Faculty in the Division of Pediatric Rheumatology
since 2003. He is also the Fellowship Director and Clinical Director.
Dr. Kietz focus is on ‘transitional care’ which is the concept of empow
ering adolescents to take charge, ownership and expertise in their health
care. The Transitional Adolescent/Young adult clinic will fill a gap and
bridge clinical services provided through the pediatric (Children’s
Hospital of Pittsburgh) and adult (UPMC) Rheumatology divisions.
Patients may either be established patients from CHP who chose to
change the locations of their care out of CHP, or need other adult
providers (e.g. Neurology, GI, Nephrology) within the UPMC system,
but would like to continue to see Dr. Kietz.
For more information on Dr. Kietz please visit http://www.chp.edu/
Article provided courtesy of the UPMC Lupus Center of Excellence
LIVING WITH LUPUS newsletter Fall 2012 edition.
Dr. Kietz is at the Lupus Center in Squirrel Hill on Tuesdays. Please
contact Dr. Kietz’s office (412-692-5081) at Children’s to schedule an
appointment.
5
LUPUS RESEARCH INSTITUTE
Lupus Research Institute Co-Hosts Lupus Congressional
Briefing to Highlight Serious Unmet Needs in Lupus
July 2012
This morning, Lupus Research Institute (LRI) joined the U.S.
Congressional Lupus Caucus and other lupus community partners
to tackle “Mitigating the Public Health Consequences of Lupus, the
Prototypical Autoimmune Disease. We brought 31-year old Kaamilah
Gilyard to DC to help members of Congress appreciate the very real
and pressing needs of people living with the often overlooked disease
lupus. She gave voice to the challenges many face getting diagnosed
with lupus and living with the disease.
The audience was genuinely moved by Kaamilah’s description of the
near-death complications she has suffered, typical of the heart and lung
damage and memory loss many people with lupus endure. Kaamilah
also emphasized the difficulty she and all too many go through to be
correctly diagnosed with lupus. It took two years and a trip to the
emergency room for her to learn that the symptoms she had since
she was 15 – fatigue, joint pain, and anemia – were not arthritis,
mononucleosis or syphilis as doctors had thought, but in fact signs of
her immune system attacking her own body that characterizes lupus.
While everything Kaamilah described painted a dramatic picture of what
is common among lupus patients, what people seemed to relate to the
most was her anxiety about accepting her best friend’s invitation to be a
bridesmaid. “I had to prepare my friend for the possibility that I could be
unable to walk down the aisle if I happen to have a flare that day.”
Speakers at the briefing included Congressional Lupus Caucus CoChairs U.S. Representatives Tom Rooney (R-FL), William Keating
(D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA)
(pictured below) as well as Susan M. Manzi, MD, MPH, West Penn
Allegheny Health System and Temple University School of Medicine
and Stephen Katz, MD, Director of National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS).
Margaret Dowd, LRI President and CEO commented, “We thank
Representatives Rooney, Keating, Ros-Lehtinen and Moran for
providing this forum and giving the floor to people living with lupus
who so powerfully illustrated as no one else could their daily struggles.
Working together on a bipartisan basis, these Representatives have
gathered their colleagues today to hear first-hand why Congress must
continue to support efforts to meet critical needs of people with lupus
and other autoimmune diseases.”
LRI Coalition Member Gathering Support for Petition
Against Fail First Step Therapy
Wednesday, September 5, 2012
Lupus Foundation of Mid and Northern New York, Inc.’s President/
CEO Kathleen Arntsen is asking New Yorkers to sign a new petition
in support of Assembly Bill 9397/Senate Bill 6464 by Assembly
Member Matt Titone (D-Staten Island) and State Sen. Catharine Young
(R-Olean). Step therapy Provisions in the New York bill would permit a
doctor to override an insurer’s step therapy requirements.
Many health insurers require step therapy, also known as “fail first
protocol,” meaning that the cheapest drug be tried first and fail before
doctors can prescribe more costly medications. After each failure, the
next more expensive drug can be used, stepping up one drug at a time.
The most expensive drug can only be tried after all other medications
have failed.
Arntsen told reporters from American News Report that her goal is not
to eliminate step-therapy but to make it “less-complicated, with a clear
and concise override process to give physicians back their power to
prescribe the most appropriate treatment.”
continued on next page
6
LRI Funded Novel Research on Lupus and the Brain Helping
to Explain Pregnancy Loss among Women with Lupus
July 3, 2012
Why is pregnancy loss more common for women with lupus? The
answer may come from a seemingly unrelated finding started 10
years ago by noted researcher Betty Diamond, MD at The Feinstein
Institute for Medical Research. Dr. Diamond is applying her initial
LRI-funded discovery of an autoantibody that attacks the brain to
provide a new biological explanation of pregnancy loss in lupus.
Auto-antibodies May be Responsible
The groundwork for Dr. Diamond’s latest study, which is funded
by the National Institutes of Health, was laid by an innovative
research finding sponsored almost 10 years ago by the Lupus
Research Institute. In the original LRI-funded project, Dr.
Diamond discovered that certain auto-antibodies, which trigger
the kidney and related physical complications of lupus, are likely
also responsible for lupus patients’ neurological, or brain, changes,
which range from headaches and memory problems to seizures and
stroke. She and her colleagues have designed an experimental drug
to neutralize these auto-antibodies. If this drug proves safe in animal
studies, clinical studies will then look at its effectiveness in lupus
patients.
Continuing to build on her findings, Dr. Diamond went on to show
that these auto-antibodies can cross the placenta and harm the
brain of the fetus. According to Dr. Diamond, this subset of autoantibodies which cause miscarriage in mouse experiments occurs in
about 40% of patients with lupus.
Her latest study with pregnant lab mice with a lupus-like disease,
revealed that these auto-antibodies triggered the loss of more female
than male fetuses. These findings, reported in the May 2012 issue of
the Journal of Experimental Medicine, may help explain reports of
births of more boys than girls to women with lupus, she said. The
reason for this gender bias could not be determined but the study
provides clues for further exploration. It is very encouraging that
Dr. Diamond’s fundamental discoveries show promise in developing
new treatment approaches to reduce the risk of pregnancy loss for
women with lupus.
For now, however, Dr. Diamond emphasized that the findings
should not worry women with lupus who are pregnant or want to
have a child. “Every woman, not just those with lupus, takes a risk
when she becomes pregnant,” she explained. “For women with
lupus, there is some increased risk for fetal loss and complications.
However, I don’t discourage my lupus patients from becoming
pregnant.”
Most Women with Lupus Have Successful Pregnancies
Recognized expert in lupus pregnancy Jane E. Salmon, M.D., of the
Hospital for Special Surgery in New York echoes Dr. Diamond’s
reassurance to women with lupus that pregnancy is often safe
and successful. A study reported by Drs. Salmon and Buyon last
year at the American College of Rheumatology Annual Scientific
Meeting found that most women with stable lupus have successful
pregnancies and healthy babies.
“Our findings showed that women with lupus whose disease is not
active and who may be taking low dosages of prednisone are likely to
have uncomplicated pregnancies."
Discovery Unfolding
“Dr. Diamond’s work is so important as pregnancy is a very real
issue for women with lupus," said Margaret Dowd, President and
CEO of LRI. “But also exciting is how this research demonstrates
the progression of the science, from a novel, out-of-the-box idea
through new drug development. We are very proud of Dr. Diamond
for her achievement in following her scientific vision over the past
decade, and we are proud of the LRI for providing the funding to
help realize that vision into reality.”
New Published Results Show Promise for Experimental
Lupus Treatment
Tuesday, July 31, 2012
A new publication of the investigational treatment for lupus,
rontalizumab, showed encouraging safety results among patients
with mild lupus in a Phase 1 study, the first phase of clinical testing.
In development by Genentech, rontalizumab is a humanized
monoclonal antibody that targets interferon-alpha, which means
that it is designed to be similar to natural human antibodies so the
body will not reject it as a foreign substance.
Based on the Phase 1 results, rontalizumab is now in the second
phase of testing in a Phase II trial, called ROSE (Rontalizumab
in Systemic Lupus Erythematosus). The randomized, doubleblind, placebo-controlled multicenter study is studying the safety
and effectiveness of rontalizumab in patients with moderate to
severe systemic lupus erythematosus (SLE). The study will enroll
approximately 210 patients at up to 100 sites in North America,
Latin America, and Europe.
7
Olympic Athlete Champion Determined to “Win” Despite Lupus
Tuesday, July 24, 2012
We will be rooting for soccer star Shannon Boxx as she goes for the gold at the upcoming Olympics in spite of her lupus.
Since her diagnosis in 2007, Shannon is determined that the disease does not define her. Shannon went public about having lupus in April
during an interview with ESPN. In a phone interview from England, she told USA reporter Janice Lloyd that she wants people to see her playing
through the disease and to encourage them to stay active.
Scratch that when it comes to Shannon Boxx. She is shooting for her
third straight Olympic gold medal.
Boxx, 35, will be running her legs off Wednesday as a midfielder for
the U.S. women's soccer team in its opener against France in the 2012
London Olympics. The team aims to rebound from a disappointing
loss in last year's World Cup final.
One of her goals ever since being diagnosed in 2007 is to make sure
the disease, which ranges from mild to severe, doesn't define her. So
far, she appears to have only a mild case. She has started nearly every
game for the national team in the past five years.
She told coach Pia Sundhage about the chronic illness before the 2008
Games but has been very private about it until recently. "My coach has
never treated me any differently," she says. Boxx went public with her
diagnosis in April and is the cover girl for the Lupus Foundation of
America's summer magazine.
"I'm feeling really great," she said in
a telephone interview from England, where the team arrived two weeks
ago. "I want people to see I'm playing through this and to encourage
them to stay active. I never want to use the disease as an excuse."
Living with lupus
-- An estimated 1.5 million Americans have lupus. (Actual number
may be higher, but there have been no large-scale studies.)
-- More than 16,000 new cases of lupus are reported annually in the
USA.
-- 5 million people in the world are believed to have a form of lupus.
-- Lupus strikes mostly women of childbearing age (15-44), but men,
children and teens develop it, too.
-- Women of color are two to three times more likely to develop lupus.
But people of all races and ethnicities can develop it.
- Lupus is not contagious, not even through sexual contact.
Source: Lupus Foundation of America (www.lupus.org)
Normally the immune system protects the body from harmful
substances, but lupus mistakenly attacks healthy tissues. The disease is
marked by flare-ups of fatigue, rashes and joint pain; in severe cases it
can cause organ damage and death.
Most days, Boxx says, she feels fine and "just like everyone else on the
team." She doesn't get flare-ups often, but when she does, she says she
has no choice but to go to bed.
"Hopefully that won't happen here," she says. "I'm not nervous about it.
I have gotten better at knowing when it's coming on."
She has been managing autoimmune diseases since 2002, when a
doctor diagnosed her with Sjögren's syndrome and told her she'd be at
risk for other autoimmune diseases.
"I was pretty much exhausted. Could barely make it up the stairs. Then
one day I could barely get through practice. I had to step out. I thought
I had mono," she says.
"For her to push on is very courageous and a good example for others,"
says physician Gary Gilkeson, chairman of the medical scientific
advisory council for the Lupus Foundation of America. "It's a scary
disease, but there's no reason she can't manage the symptoms. Exerting
and playing soccer is OK for her.
"Some people get a diagnosis and since it's an unpredictable disease,
they stop making plans to go to college, to get married and to have
kids."
Boxx suspected she might have another autoimmune disorder when
she developed a new symptom while in China for the 2007 World Cup.
"Our legs always hurt when we travel, but I asked a teammate to tell me
when her legs stopped hurting. Hers were fine the next day and mine
were still sore. I knew it was time to go back to the doctor."
Once diagnosed, she started taking medication to control
inflammation. Trainers put her on a lighter weightlifting routine than
the other players. But she doesn't miss out on much.
When the team arrived in England, they built in time to get acclimated
to the time change and enjoyed seeing the sights in Northumberland.
Her favorite? "We got to tour Alnwick Castle where Harry Potter was
filmed," she says. "We don't always get to go to fun places when we
travel."
LRI Commends GSK as Leader in Sharing Clinical Data
Wednesday, October 17, 2012
The Lupus Research Institute commends GlaxoSmithKline (GSK) for
announcing their plans to share all their clinical trial information with
the scientific community. For lupus patients, it will give scientists access
to a breadth of data to learn more about the results of clinical trials testing
the safety and effectiveness of the first treatment for lupus in 50 years,
Benlysta.
As noted by many industry commentators, this represents a leadership
step in transparency among the pharmaceutical industry.
8
BOOK CORNER
If You Have to Wear an Ugly Dress, Learn to Accessorize
Guidance, Inspiration, and Hope for Women with Lupus, Scleroderma, and Other Autoimmune Illnesses
By Linda McNamara, RN,
MBA and Karen Kemper,
MSPH, PhD
“Lupus and scleroderma are
our shadows but they do
not define us. We may have
to wear the ugly dresses
of chronic illness but we
don’t have to be the ugly
dresses.”-Linda & Karen
If you are experiencing
a long-term illness or
disability, this book is for
you-as well as your family
and friends. The authors
share a collection of deeply
personal stories and poetry
to describe their journey
from illness to health,
well-being, and fruitful living. Their creative life management strategies provide
a road map to help you:
•
•
•
•
overcome overwhelming feelings of loss, grief, anger, fear, and powerlessness;
navigate a healthcare system filled with individuals who can be patronizing
or dismissive:
field well-intentioned but hurtful remarks such as, “But you look so good!”
walk the tightrope between seeking and accepting help and fiercely guarding
your independence.
Chronic illness forces you to slow down and reexamine your values, you choices,
and the way you define yourself. In this book, the authors offer companionship
throughout the process, helping you face your challenges with dignity and grace.
This revised and updated edition
answers all the questions about
lupus. New sections include information about men with lupus,
support groups, research and
clinical trials.
Also, there is more in depth
discussion about dealing with
the symptoms and the initial
diagnosis, children and adolescents with lupus, and updates on
medications.
Cost through the Lupus
Foundation of PA is $12.00.
Contents
Part 1: The Ugly Dress
• About Autoimmune Illnesses
• Karen’s Ugly Dress-Scleroderma
• Linda’s Ugly Dress-Systemic Lupus
Part 2: Accessorizing the Ugly Dress
• About Accessorizing
• Managing Feelings
• Managing Time and Energy
• Navigating the Healthcare System
• Managing Perceptions
• Achieving Overall Health and Well-being
Book excerpt: page 35. Accessorizing is not about trying to deny, shut out, or
control your emotions. It’s about becoming more aware of and knowledgeable
about what you’re feeling and thinking so that you can have less emotional reactivity. Dwelling too long on negative thoughts and feelings without processing
them and moving on can suck your energy and impact all your relationshipsincluding the relationship with yourself. They negatively impact your health and
well-being by affecting the immune and nervous systems. Bringing thoughts and
feelings into awareness is not a passive process. By noticing what you’re thinking
and feeling, you gain insight that enables you to act in a more conscious and
deliberate way. It allows you to choose the best response for the situation instead
of being driven by fear, anger, or despair.
To learn more about this book and the authors, visit their website at www.theuglydress.com
Soft back, 199 pages
ISBN: 978-1-60494-595-9
Copyright 2011. Published by Wheatmark.
Cost $16.95 U.S.
Written by a disability lawyer, this
resource has been a successful
guide for many claimants applying
for their social security disability
insurance (SSDI) benefits.
Cost through the Lupus Foundation of PA is $15.00.
9
Information and Resources
Drugs That Interact With Grapefruit on the Rise
By Denise Mann
Reviewed by Louise Chang, MD
WebMD Health News
Nov. 27, 2012 -- The number of drugs that can be risky
when taken with grapefruit is on the rise, largely due to
the influx of new medications and chemical formulations,
a new study shows.
juice once a day for three days, produced a 330% greater
concentration of the drug compared to taking it with water. This can cause life-threatening muscle damage called
rhabdomyolysis.
As it stands, there are now more than 85 drugs that may
interact with grapefruit. The number of drugs that may
result in potentially fatal side effects when mixed with
grapefruit increased from 17 to 43 during the past four
years. This equates to more than six new potentially risky
drugs a year.
“Grapefruit and grapefruit products may interact with a
broad class of medications ranging from cardiovascular
to hormonal drugs,” says Tara Narula, MD, the associate director of cardiac care at Lenox Hill Hospital in New
York City.“Some have more of an effect if you take them
in close proximity to drinking grapefruit juice than if you
space it out, but there can still be an interaction if you take
the pill the night before or 12 hours before consuming
grapefruit or grapefruit juice.”
The list includes some statins that lower cholesterol (such
as atorvastatin, lovastatin, and simvastatin), some antibiotics, cancer drugs, and heart drugs. Most at risk are older
people who use more prescriptions and buy more grapefruit.
Here’s what happens: Grapefruit contains furanocoumarins, which block an enzyme that normally breaks down
certain medications in the body. When it is left unchecked,
medication levels can grow toxic in the body.
It’s not just grapefruits, either. Other citrus fruits such as
Seville oranges (often used in marmalade), limes, and
pomelos also contain the active ingredients (furanocoumarins), but have not been as widely studied.
GRAPEFRUIT AND SOME MEDICATIONS: RISKY
BUSINESS
Researchers searched the medical literature for articles on
grapefruit and drug interaction using key terms. They also
looked at prescribing information for recently approved
drugs in Canada. Their findings appear in the Canadian
Medical Association Journal.
Drugs that interact with grapefruit are taken by mouth.
The degree of the grapefruit effect can vary. With some
drugs, just one serving of grapefruit can make it seem like
a person is taking multiple doses of the drug.
This interaction can occur even if grapefruit is eaten many
hours before taking the medication. For example, simvastatin, when taken with about a 7-ounce glass of grapefruit
“If you consume grapefruit juice and take medications, be
careful,” Narula says.“If you need these drugs and there
are not appropriate substitutes, you may need to limit or
reduce your consumption of grapefruit juice and products.”
The researchers note that grapefruit interaction is specific
to certain drugs and doesn’t necessarily affect an entire
drug class. This can allow for grapefruit-friendly options.
Never stop taking prescription medication without first
talking to your doctor.“Say, ‘I am on these medications, do
I need to be careful about grapefruit juice?’”
If you are not taking any drugs that can interact with
grapefruit, it is fine to eat and drink grapefruit and grapefruit products, which can be a healthy part of the diet, says
Despina Hyde, RD. She is a registered dietitian at New
York University Langone Medical Center.
But better safe than sorry.“Double check with your doctor
or pharmacist, as it doesn’t really require a lot of grapefruit
juice to produce a dangerous interaction,” she says.
SOURCES:
Bailey, D.G. Canadian Medical Association Journal, published online Nov. 26, 2012.
Despina Hyde, RD, New York University Langone Medical Center, New York City.
Tara Narula, MD, associate director, cardiac care, Lenox Hill Hospital, New York City.
© 2012 WebMD, LLC. All rights reserved.
10
EVENTS ACROSS P
s Night
lity Awarenes
Lupus Disabi
Justice Severance
Lupus Loop
with Paul
in Pittsburgh
Lupus Lo
op Pittsb
urgh. Ra
Colon.
mo
n Foster,
Kostyak
with best bud Jos
h Juliano
Lupus Walk Mead
ville , PA
Sally Wig
Gracie &
Josh Julia
no
Lupus 5k
Meadville with Clown Toots
ie
, PA
gin, Jean
Davis, W
illie
gin
ith Sally Wig
lon w
an, Willie Co
Loop Chairm
11
S PENNSYLVANIA
Scranton Lupus Loo
p
op
Scranton Lupus Lo
Meadville Lupus Loo
p
airmen Tom
nge Ch
Lupus Challe
Challenge Chairma
n Dan Pietragallo
and Team
y Caufield.
Miller and Ja
12
LIFE WITH LUPUS: TAMMY GRAY
Feeling Your Best
by Jan Grice
Saturday, September 9, 2012
dawned gray and wet, but
Tammy Gray and her team of
40 friends and family
members headed down the
highway toward Pittsburgh
with enthusiasm. A month
earlier, Tammy had received a
copy of Pennsylvania Lupus’
Lupus News and saw the notice for the annual Lupus Loop Run/
Walk. Diagnosed with lupus in 2006, she was receiving treatment
at UPMC’s Lupus Center for Excellence but never had any contact
with the Lupus Foundation. “I don’t know why I got the newsletter,
but as soon as I read about the event, I knew I wanted to do it.”
She told her sister, who posted it on Facebook, and within a week,
the team was growing. Her daughter Barbara designed and created
a signature T-shirt. Tammy recalls, “I’d look at the team list and see
people I didn’t even know! Even friends of my friends were thrilled
to be involved.” Despite the gloomy weather, Tammy came home
that day with sunshine in her heart. “It was so good to speak with
other people who have lupus,” she says. “I had a ball! We were the
last people to leave.”
For so many people with serious illnesses like lupus, life revolves
around managing the disease – doctor appointments, extra rest,
exercise, and periods of hospitalization. The responsibilities of
work and family are often all one can manage. Not having a forum
in which to share feelings and experiences can create a feeling of
isolation that often leads to depression. To address this issue, the
UPMC Center for Integrative Medicine is sponsoring a SLE
research study, called “Feel My Best.” Tammy is a participant in
this study. Her positive attitude is an excellent example of how
supportive counseling can improve the quality of life for chronically
ill patients.
When Tammy agreed to participate in the study, she was assigned
to a group that would receive individual supportive counseling. “I
just don’t sit down and talk about myself easily,” she explains. “I
tend not to share all the details about how I am feeling with my
family. I think it will just make them worry more.” Nevertheless,
she found her weekly chats with Dr. Carol Greco very comforting.
“She validates my feelings and gives me a great deal of confidence.”
Tammy has recently lost her father, who was a great source of
support in her life. She was able to find an outlet for this grief
during her counseling sessions. Keeping a journal is also part of
the program. Tammy has finished the weekly session portion of
the study, but continues to write in her journal. She says, “The
program helped me to learn what triggers my anxiety, and that
lessens the difficulty of living with lupus.”
Tammy’s life with lupus began officially in 2006, but like so many
others, she has struggled with health issues for much longer. As a
young woman in the 1980s, Tammy had an episode of idiopathic
thrombocytopenia purpura (ITP) and was treated with high doses
of prednisone for a six-month period and ultimately, a splenectomy.
When she recovered, her doctor told her that she was very likely to
develop an autoimmune disease. An elementary school teacher,
Tammy continued to live an active life. She is currently a second
grader teacher in the Hempfield School District. When talking
about her work, her enthusiasm overflows: “In my twenty years of
teaching, I can honestly say that there was not one day I didn’t want
to go to work. I don’t go to work; I go to school!”
About seven years ago, Tammy began to have trouble with her ears.
At first, she thought it was an ear infection, because there was some
drainage and her hearing was muted. Despite multiple visits to
doctors and treatment with antibiotics, it didn’t improve. She was
referred to a dermatologist because the skin was flakey. The
dermatologist diagnosed psoriasis and suspected discoid lupus.
Tammy recalls, “The only experience I had with the word lupus
was that one of my second graders’ mother had died from it.” The
doctor was very reassuring, and explained the nature of the skin
disease. Because Tammy also had a mild butterfly rash on her face,
the doctor ordered a comprehensive series of blood tests.
Unfortunately, the results pointed toward systemic lupus.
Now being seen by a rheumatologist, Tammy began treatment. She
recalls, “After seeing this doctor for several months, I was feeling
very hopeless. I wasn’t doing very well.” The doctor-patient
relationship is a primary factor in how well a patient with chronic
illness fares. If there is not a good rapport, poor communication
can result. Tammy was wise to ask for a new referral from her
dermatologist, who sent her to UPMC’s Lupus Center for
Excellence. There, Tammy underwent more thorough testing. She
jokes, “If there was test, I had it!” Her sister has multiple sclerosis,
so she was tested for this, too, but was not afflicted. At about this
time, Tammy scanned the Internet for information about lupus. “I
was still convinced I was going to die,” she says. “My new doctor
told me to stay off the Internet, except for the sites he
recommended. His advice was, ‘DON’T GOOGLE!” Tammy took
him at his word, and began to develop a good relationship. Today
she has a new doctor at the center, Dr. Kimberly Liang, whom she
says makes her feel as though she is her only patient. Over the
years, Tammy has faced many challenges: blood clots in her lungs,
a fall that shattered her hip, a hip replacement, gall bladder surgery,
pneumonia, and an appendectomy. She has missed some work, but
has good support from her team of co-teachers. Finding the right
mix of medications has been difficult. Fatigue is a constant
problem. Yet, Tammy accepts that the medications can only do so
much. “I think that the meds are going to make me feel as best as
they can, but the rest is on me. I have to know my limitations, get
plenty of rest, and take care of myself,” she acknowledges.
13
Through her counseling with the Feel My Best study, Tammy has
drawn strength from talking about her father. He died in January of
2011, after a long illness. Tammy helped to care for him. When she
was diagnosed with lupus, his advice to her was, “Tammy, you can
go with it, or you can fight it.” She says, “He was all about family.
He cried when I was diagnosed. When he was sick, he wanted to
make sure that I was going to be okay.” Tammy’s love for her father
is the bulwark of her strength. She draws inspiration from his
example. “I’ve learned that you have to change what you can and
accept what you cannot change.” Tammy tries to pass this wisdom
along to her students. “I try to teach them to have a good attitude.
Life is not fair. You have to make the best of your situation.”
Tammy applies this philosophy in big and small ways. Troubled by
anxiety about her illness, she took steps at work to help minimize
the chance of infection. Because the custodians wipe the students’
desks only once a week, Tammy asked permission to allow her
students to use their desks as white-boards. The children wipe away
the dry-markers multiple times a day and Tammy cleans each one
with a bleach spray at the end of the day. She explains, “I’m helping
myself, and also teaching good hygiene to my kids.” Her practical
attitude helps her accept that she must constantly monitor for any
small changes in her body. A second bout of blood clots in her
lungs made her realize the importance of being aware of leg pain.
She initially felt responsible for not catching the signs, but later
realized that “I didn’t do anything wrong. Lupus is just
unpredictable. I cannot take anything for granted. I can only do
the best I can.” She has learned not to hold on to negative feelings
and to always look forward. She recalls a conversation with her
father, near the end of this illness in which he said, “This is not a
good bye; it’s a see-you-later.” For Tammy, and for others whose
todays may be troubled by pain, this forward vision toward
tomorrow can be a great step to “Feel My Best.”
Reducing Depressive
Symptoms in SLE the Feel My Best Study
Depression is a common problem
in patients with SLE, with important
health and quality of life consequences. This research study is looking at
how useful the following methods are
in reducing depressed mood in SLE:
Supportive Counseling (SC): participants discuss topics that are important
to them while a health professional
who is experienced in lupus provides
emotional support by being a good
listener.
Mind-Body Skills Training (MBST):
includes cognitive therapy techniques,
mind-body relaxation skills, and mindfulness training.
Both SC and MBST are helpful for decreasing distress and improving health
related quality of life in individuals
with low mood and chronic illness.
While you may receive no direct
benefit by participating in this study,
the information gained by this study
will help to further our understanding
of lupus and depression.
The study involves 4 evaluations and
8 treatment sessions over 1 year. Each
evaluation will involve a medical
exam, blood draw, and questionnaires,
and will take up to 2 ½ hours. The
8 treatment sessions will take place
approximately weekly for 1 hour each,
with the option of an additional 3
monthly “booster” treatment sessions.
You will receive a total of $80 if you
complete all parts of this study.
14
BRANCH NEWS
ERIE BRANCH
The spring Educational Program, “Living Well with the WOLF”
(Latin for Lupus) took place on May 19, 2012 in the chapel of the
Wesbury Methodist Retirement Community in Meadville, PA. Dr.
Gerald Francis, talked about “Lupus Fog” and practical ways to
deal with memory issues in lupus. Dr. Amy Miles did an
excellent job of explaining the many tests that are done to
diagnose lupus as well as those that are ordered to monitor how
lupus affects each patient’s body. Abby Alter discussed the
benefits of Yoga . The program was well attended and those
presented expressed that they had learned new information.
On June 13.2012 Donna Lawrason and Jane Lippincott were
invited to present how the Lupus Foundation of PA assists lupus
patients in the Erie area to the General Electric Community
Services Board. The update was well received and the employees
of GE donated $2000 to support the services to lupus patients in
the Erie Branch.
The summer was a time when those in Erie were busy with their
families or dealing with flares caused by lupus. Support Groups
were sparsely attended and work was started to prepare for the
annual Lupus Loop in September.
The Lupus Loop was held on Saturday, September 15,2012 at
Roche Park in Meadville. The Phoenix walk which was held in
Mercer county in October of 2011 was combined with the
Meadville walk this year in hopes that more funding might be
raised by combining the two events. September 15 was a beautiful
day and for the first time this 5Kwalk/run was timed by “Runner’s
High” from Grove City. David Murphy of Conneatville, PA won
first place in the run and Stephanie Shipton was the first place
female runner. The Outback of Erie did a wonderful job of
catering lunch for all of those who attended and King’s Family
Restaurant provided “Frownie Brownies” for dessert. The students
of Allegheny College’s Union Latina did an outstanding job of
registering participants, giving runners direction, passing out shirts
and prizes as well as walking to support the lupus cause. Patty
Gelatko won the individual prize for raising the largest amount of
money for this event and Team Amber was the first place team to
raise the largest sum of money for lupus. The captain of this team,
Amber Clark is 8 years old and does an awesome job of raising
funds all through the year for the lupus cause which is so dear to
her heart. Her aunt, who is a lupus patient,is her motivation for all
that she does and we are all grateful for her dedication to finding
the cause and cure for lupus and are also challenged by Amber’s
example.
The Erie Branch had its fall Educational program at Edinboro
University on Saturday, October 13, 2012. Dr. Kelly Shields
spoke about the current research that she is doing to discover the
effects of lupus on the cardiovascular system. Dr. Paul E. Peirsel
spoke about the importance of using complimentary modalities in
the treatment of lupus. Both speakers were excellent and those
who attended benefited from talking with Drs. Shields and Peirsel
on a personal level to hear answers to their many questions.
Our last event for this year will be our traditional Christmas
dinner and White Elephant exchange on Thursday, December 13,
2012 at 6pm at the Perkins on Route 322 in Meadville, PA.
Hopefully the weather will cooperate and many will be able to
attend this enjoyable evening. It’s fun to eat dinner together and
also to exchange junk from our homes which has lost its use or
luster but may become someone else’s treasure before the
evening ends.
POCONO/NE BRANCH
Spring has sprung here in the Northeast. The temperature was
warmer than average this winter which was a refreshing gateway
to the new season. In late February, we welcomed our new Events
Coordinator Sarah Piccini to the office. Sarah has a background in
public relations and program management and has worked with
several other non-profit organizations in Lackawanna County. This
February, we also welcomed University of Scranton intern, Amber
Cheesman. Amber is majoring in Community Health Education
with a Minor in Counseling and Human Services. While she is
here, she will be developing and conducting a community needs
assessment as well as assisting with our new membership
package. Welcome Sarah and Amber!
Here in the branch office, our monthly support and education
series Successful Living with Chronic Illness successfully kicked
off last fall. Past topics included Benlysta and Clinical Trials,
Using the Plate Method to Plan Meals, Journaling, Visualization
and Breathing Exercises. The monthly meetings are held on the
3rd Thursday of the month at 12:00 p.m. at our branch office.
Participants are encouraged to bring lunch. Please also mark your
calendars for our Gluten-Free Information Exchange on the 4th
Thursday of each
month at 6:00 p.m. at Wegmans in Dickson City, facilitated by
our nurse consultant, Debbie Boyle.
We hosted six first year medical students from the
Commonwealth Medical College for their Community Immersion
Program experience. Through this experience, students were
immersed into the Scranton community in order to learn more
about the community and the local resources provided to
individuals with chronic illnesses. A big thank you goes out to
Cynthia Donlan, Luzerne County Representative and lupus
patient. Cynthia volunteered her time to mentor the students
15
POCONO/NE BRANCH NEWS CONTINUED
about lupus and autoimmune diseases and was their simulated
patient. Thank you Cynthia!
The New Patient Orientation for those newly diagnosed with
lupus, their families, and friends was held on April 11, 2012 at
the Inn at Nichols Village in Clarks Summit. Subjects discussed
included: What is Lupus, Nutrition, Coping Techniques including
Journaling, and Doctor-Patient Relationships & Resources. We’d
like to thank the Inn at Nichols Village for sponsoring the event
and the Lackawanna Interagency Council for their grant to
provide Lupus Journals for Wellness to participants.
Volunteers are busy promoting lupus awareness and education at
health fairs throughout the community. On March 27, 2012 we
participated in Wilkes University’s Annual Health Fair. On April
3, 2012 we participated in Keystone College’s Health Services
Health Fair. We look forward to the 8th Annual Health Fair in
the Park on Saturday, June 9, 2012 fr om 9:00 a.m. – 12:00 p.m.
at Nay Aug Park in Scranton.
Ski for Lupus Day, held on January 8, 2012, was a great success!
Thank you to Greg Confer, Bob DeLuca and all of the staff at Elk
Mountain for a fantastic day. Also, thank you to volunteer Barbara
Bourgeois for making the fabulous scarves that helped us raise
even more funds for lupus at the event, and thank you to all of
you who came out and skied!
Lupus Celebrity Dinner Bingo will be held on Wednesday, April
25, at Genetti Manor in Dickson City. The doors open at 4:30 pm
and a chicken dinner will be served at 6:00 pm. The cost is $30
per person and includes dinner and one triple bingo card. Extra
bingo cards can be purchased at the door for an additional
charge. WNEP-TV’s Noreen Clark will be our celebrity bingo
caller, and Fran Pantuso will be our celebrity MC. Come out and
try your luck at winning event tickets, trips, a new TV and much
more!
The Pocono/NE Branch hosted the Lupus Loop 5k Walk/Run on
Sunday, September 16 at Nay Aug Park in Scranton. More than
350 people came out to enjoy the sunshine and raise awareness
about lupus. Volunteers staffed basket raffles and helped children
make their own butterfly clips.
Our Luzerne County Support Group leader, Cynthia Donlan, has
been busy with lupus awareness and education above and
beyond her monthly support group in Hazelton. Her lupus
presentations on the WYLN Newsmaker show and Channel 13
4PM news were informative to the general community. From an
outreach standpoint, Cynthia provided lupus informational
packets for Northeast Counseling, administered lupus screenings
at a senior expo, and distributed lupus information flyers around
the community. The efforts of volunteer are incredibly important
to the mission of our organization as is demonstrated by her
contribution of time and talent. As a person who deals with lupus
on a daily basis, Cynthia promotes education and awareness from
a personal basis. Her support group meets on the second Tuesday
of each month at 7PM at Bowl Arena. Please contact Cynthia at
570-956-0072 for details.
Note: If you have an interest in becoming a volunteer with the
Lupus Foundation of PA, please contact our office at
1-800-800-5776.
PITTSBURGH BRANCH
Many thanks to the speakers at our fall education seminar, Living
Lupus in 2012 which was held on Saturday, September 22, 2012 at
the Doubletree in Monroeville. Adjusting Your Concepts:
Chiropractic Care for Lupus Patients was presented by William
Marino, D.C. (see lead article for more information), Eat Well to
Live Well by Leslie Bonci, MPH, RD, LDN, (see attached handout)
and Homeopathic Treatments & Natural Alternatives in Lupus by
Cindee Gardner, PhD., HD (R. Hom) provided complementary
medicine treatment options for lupus. New and previous attendees
alike found the topics informative and the time spent with others
with lupus supportive. Sincere thanks to our speakers for their
presentations and willingness to give of their time!
location and the speakers and arranged local advertising for their
event. Gwen Breuer, DO, Marc Levesque, MD and Kenneth
McGaffin, MD were the featured speakers. All of them take an
active part in caring for Jean and graciously agreed to share their
expertise. Jean had an extensive display of sun protective items,
free samples and literature. The Pittsburgh office provided other
various lupus information and literature for the attendees to take
with them. Jean said she wanted to make sure that people with
lupus “don’t feel alone. We have a support group that meets
monthly.” Thanks, Jean, for a great evening of education.
Special thanks to Pat Dobosh and Rob Donahue for their donation
of a Canon fax/copier/printer for our office. We appreciate their
thoughtfulness!
The 2013 spring education seminar is shaping up to be somewhat
different in light of current health care reform. We expect to have a
series of speakers discussing health delivery from national, state
and local levels. Please view our web site for the date and specifics
about this upcoming event.
We welcome calls to our office about supplies that you may no
longer need, especially paper products and up to date computers
and monitors. If you have other office items, please call our office
at 412-261-5886 to inquire. Thank you.
On Tuesday, October 16th, Jean Schaeffer, our Armstrong County
Representative provided LUPUS, An Educational Seminar at the
First United Methodist Church in Kittanning. Along with her
husband, Bob and a number of helpers, she worked to secure a
Pittsburgh Pirates 2012 Disability Awareness Celebration was held
on Friday, July 6th -. The Foundation participated in a Pre Game
Awareness Table and Game attendance with Foundation
recognition. Thanks to all that participated.
16
PITTSBURGH BRANCH NEWS CONTINUED
Twenty-Third Annual Lupus Challenge Golf Tournament, Presented
by the Families of Lisa King McKean, Kathleen Rooney Miller and
Emily Pietragallo, was held on July 16th at The Club at
Nevillewood. Our Honorary Chairman, Jay Caufield along with
Co Chairs Tom Miller and Danny Pietragallo hosted an amazing
fund raising golf event to benefit Lupus patients and their families.
A Special “Thank You” to Tom Miller and supporters for their
generosity. Hope to see all of you again next year.
In addition to the Lupus Challenge:
Freddie’s II 7th Annual Golf Outing – was held on September 10,
2012 Hosted by and Thanks to Ron Kragnus, Patty Dagnal, Bob
Barrett, Andy Burns and Bill Hurley
Traci Vucish 6th Annual Memorial Golf Classic – was held on
September 17, 2012 Hosted by and Thanks to Mike & Lori
Albright, Mike & Val Vucish and the Vucish Family
Thanks to the generosity of these golf events it is possible to
provide education, awareness and research in Pennsylvania.
In addition to the Loop, Willie hosted an Autograph Signing
Session at the Outback Steakhouse in the North Hills. This
generous event sponsored by Outback provided additional funding
and awareness for the Loop.
Thank you to Willie Colon and Melissa Franko and Family for all
of their time and hard work.
We had many dedicated and hard working volunteers work our
concession booth at the Constellation Senior Players Championship
at the Fox Chapel Golf Club in June. Everyone was wonderful and
we all had a good time. Many even came back to work additional
days! Thanks so much to everyone who came out in answer to this
huge request!! We also thank the following groups and
organizations for their help and for encouraging their amazing
employees and friends: Alcoa, BNY Mellon, Cigna, Guardian, HJ
Heinz, Marino Chiropractic, Nugent Family, Pittsburgh Cares,
PUMP, UPMC Lupus Center, US Bank and Volunteer Match. We
enjoyed working with everyone and hope you all will consider
volunteering with us again.
We did “ Team up to Tackle Lupus” with Pittsburgh Steeler, Willie
Colon on Pittsburgh’s North Shore for the annual Lupus Loop 5K.
Thanks to our Sponsors, Hefren Tillotson and Outback Steakhouse
together we raised funds and awareness for Lupus. The event took
place on Saturday, September 8th on the Great Lawn at Heinz
Field . Aside from the rain storm over 700 participants came out in
support of Lupus patients.
HARRISBURG BRANCH
The Harrisburg Branch of the LFP is currently in a staffing
transition. In cooperation with the State Board of Directors,
Branch Council Members and our very dedicated volunteers, we
have been able to continue to answer patient and family calls,
service members and host scheduled fundraising events.
PA State Board Member, Melissa Franko served as Chair of the
two walk runs and with the help of Dr. Lisa Scalzi, Dr. Nancy
Olsen and a cast of volunteers, walks took place at the Clipper
Stadium in Lancaster and the Milton Hershey School in Hershey.
Thanks also to all of our sponsors and walkers for the funds raised
for this event. See you all next year.
Special Events: Harrisburg Branch - Lupus Loops
A big thanks to all who came out to support lupus awareness at
the Lancaster and Hershey Lupus Loop 5K’s.
TREASURES…….
A great big THANK YOU and a HUG to all our wonderful volunteers! We are grateful for your time and energy
contributed in support of our projects and events throughout the year. We simply could not have accomplished so
much or have gotten so far without you. You are treasurers to the staff, and we are constantly inspired by your willingness to give so freely. Thank you for being there when we are in need, and for lightening and brightening our
days with your smiles.
Success in life has nothing to do with what you gain in life or accomplish for yourself. It's what you do for others.
- Danny Thomas
17
"Smoking is bad for those who don't have lupus, but it make
lupus even worse."
"Patients with lupus who smoke have more active cutaneous
disease. In additon, nicotine frequently aggravates Raynaud's
phenomenon, accelerates vascular disease, worsens high blood
pressure, makes antimalarials less effective, and increases the
greater risk of stroke, which is already a worry of patients with
SLE. There are no good reasons to smoke."
pg 195. The Lupus Book, 4th edition by Daniel J. Wallace, MD
18
COUNTY REPRESENTATIVES
ADAMS
Kristin Hundley
717-337-9226
ALLEGHENY
Branch Office
412-261-5886
ARMSTRONG
Jean Schaeffer
724-548-5932
BEAVER
Sheila Drevna
724-891-2884
BEDFORD
Sally Frear
814-623-5820
BERKS
Melissa Rogers
610-376-5402
BLAIR
Marjorie Snyder
814-944-5911
BUTLER Rose Hinch
724-283-8811
CAMBRIACathy Ringler, RN 814-242-9787
CENTRE
Melissa Ostroff-Gundrum
814-235-1376
CLARION
Kathy Baker, RN
814-221-8407
CLEARFIELD
Susan Bender
814-342-1889
CLINTON
Teresa Kodish 570-753-8878
CRAWFORD
Linda Bauer
814-382-0230
DAUPHIN
Carol Lupkie
717-564-1170
ELK
Lynn Hoffman
814-781-6493
FAYETTE
Roxanne Ridgely
724-529-2402
FOREST
Donna Confer
814-755-4410
FRANKLIN
Kathleen Rollins
717-264-7099
GREENE
Linda Husenits
724-833-4761
HUNTINGDON
Ruth Hockenberry
814-448-3152
LANCASTER
Tammy Hoover
717-721-1625
LAWRENCE
Elvira Francazio
724-658-7826
LEBANON
Greg Keiper
717-273-2094
Jackie Brubaker
717-450-3336
LUZERNE
Cynthia Donlan
570-454-1706
Carol Weaver
570-443-7292
LYCOMING
Beth Good
570-398-1355
MERCER
Lee Gall
724-253-2182
MCKEAN
Mary Dynda
814-362-4546
MIFFLIN
Brenda Fike
717-899-7737
MONROE
Barb Bourgeous
516-582-9719
NORTHUMBERLAND
Nancy Stuckey
570-473-1210
PIKE
Barb Bourgeous
516-582-9719
POTTER
Brenda Bonczar
814-274-8529
SCHUYLKILL Jackie Ritzko
570-691-6935
SOMERSET
Dolores Wasylczak, RN
814-445-8684
VENANGO
Cathy Graf
814-797-2725
WARREN
Dave & Helen Slocum
814-726-8643
WASHINGTON
Vickie Law 724-258-6198
WAYNE
Barb Bourgeous
516-582-9719
WESTMORELAND
Carla Bates
724-797-7936
Christine Hoke
412-558-1247
WYOMING
Carrie James
570-836-2810
YORK
Denette Reed
717-252-3610
Deb Downs
717-699-0475
ALLEGHENY, CAMERON, INDIANA and JEFFERSON Contact Pittsburgh Branch Office at 1-800-800-5776
ERIE and McKEAN
Contact Erie Branch Office at 1-866-292-1472
COLUMBIA, CUMBERLAND, FULTON, JUARIATA, MORTOWN, PERRY, SNYDER and UNION
Contact Harrisburg Branch Office at 1-888-215-8787
BRADFORD, CARBON, LACKAWANNA, LEHIGH, NORTH HAMPTON, SULLIVAN, SUSQUEHANNA and TIOGA
Contact Pocono Branch Office at 1-888-995-8787
19
STATEWIDE ONGOING MONTHLY SUPPORT GROUP PROGRAMS
ERIE BRANCH
CRAWFORD
Perkins, Route 322, Meadville
Second Thursday each month 6:30-8 pm
Contact Jane Lippincott RN 1-866-292-1472
ERIE
St. Vincent’s
Fourth Thursday each month 6-7:30 pm
Contact Janie Lippincott RN
1-866-292-1472
MERCER
UMPC Womancare
Third Thursday each month 6:30-8 pm
Contact Janie Lippincott RN
1-866-292-1472
VENANGO/CLARION
Alternate monthly
Clarion Forest VNA, Clarion, PA
Jan, Mar, May, July, Sept, Nov
UPMC Seneca Place, Seneca, PA
Feb, April, June, Aug, Oct, Dec
4th Friday each month 10-11:30 am
Contact Janie Lippincott RN
1-866-292-1472 or
Kathy Baker RN
814-221-8407
LEBANON
Lebanon VA Medical Center
Building 22, 2nd floor - room 219
Second Monday each month 7 pm
Contact Jackie Brubaker
717-450-3336
MINORITY AWARENESS
Hemlock Girl Scout Council Office
Third Thursday each month 7 pm
Contact Debra Browning
717-657-4767
SUNBURY
Sunbury Community Hospital
For meeting schedule
Contact Nancy Stuckey
570-473-1210
PITTSBURGH BRANCH
AFRICAN-AMERICAN SUPPORT GROUP CIRCLE L
Homewood-Brushton
Laketon Heights United Methodist Church
Second Wednesday each month 6 pm
Contact Mattie Faye Hines
412-243-3119
HARRISBURG BRANCH
BEAVER COUNTY
St. John’s Lutheran Church
Fourth Tuesday each month 6 pm
Contact Sheila Drevna
724-891-2884
CHAMBERSBURG
Summit Health Center
Fourth Monday each month 7 pm
Contact Kathleen Rollins
717-264-7099
BUTLER
Hill United Presbyterian Church
Third Tuesday each month 7 pm
Contact Rose Hinch
724-283-8811
DANVILLE
Geisinger Medical Center
For meeting schedule contact
Cindy Matzko, RN, MSN
570-271-6831
CLARION
See Venango/Clarion in Erie Branch
LANCASTER
Lancaster General Health Campus
Third Sunday of the month 4:30-6 pm
Contact Tom Spaeder 717-394-8989
MONONGAHELA VALLEY HOSPITAL
Healthy Directions
Second Tuesday each month 1 pm
724-348-6699
UPMC PASSAVANT
Third Tuesday each month 7 pm
Contact Valarie Brown, RN
412-527-3335
WEST MIFFLIN
Holy Spirit Roman Catholic Church
Third Thursday each month 7 pm
Contact Diane Collins, RN
412-469-2079
POCONO/NE BRANCH
HAZLETON
Bowl Arena
Second Tuesday each month 7 pm
Contact Cynthia Donlan
570-454-1706
SCRANTON
Branch Office
Third Thursday each month 12 pm
615 Jefferson Avenue
Call 558-2008 for meeting time
JOHNSTOWN
Memorial Medical Center
Second Wednesday each month 6 pm
Contact Cathy Ringler, RN
814-242-9787
TELEPHONE SUPPORT GROUP
First Wednesday each month -7:00 pm-8:00 pm
Get the latest information, as well as support, without leaving your home. All you need is a telephone. To receive your callin instructions, contact the Pittsburgh Branch at 412-261-5886 or toll free 1-800-800-5776
At the soundof the tolling midnight bell
a brand new year will begin.
Let's raise our hopes in a confident toast,
to the promise if ushers in.
May your battles be few, your pleasures be many,
your wishes and dreams be fulfilled.
May your confidence stand in the face of loss
and give you the strength to rebuild.
May peace and heart fill all your days
may serenity grace your soul.
May tranquil moments bless your life
and keep your spirit whole.
- Best wishes from the staff of the Lupus Foundation of Pennsylvania
Our Mission:
TO PROMOTE AWARENESS, EDUCATION, SERVICE
AND RESEARCH FOR THOSE AFFECTED BY LUPUS.
Donor Option
Pittsburgh Branch
Landmarks Building
100 West Station Square Drive
Pittsburgh, PA 15219
LUPUS FOUNDATION OF PENNSYLVANIA
NON-PROFIT ORG.
U.S. POSTAGE
PERMIT #1945
Pittsburgh, PA