THE SCLERODERMA SOURCE
Scleroderma Foundation Tel: 248.865.7259 Fax: 248.865.7523
Michigan Chapter Toll Free: 800.716.6554
30301 Northwestern Hwy., Ste. 300 www.scleroderma.org/chapter/michigan
Farmington Hills, MI 48334 MIchapter@scleroderma.org
2008 Patient Education Days Our Mission
On Sunday, February 17, our Chapter held our ﬁrst Patient Education The mission of the Scleroderma
Day this year and welcomed many enthusiastic attendees who enjoyed Foundation is threefold: To
presentations on Scleroderma 101 given by Delﬁn Santos, MD and the provide educational and
Art of Camouﬂage Make-Up by Francie Paull, Make-Up Artist with Todd’s
emotional support to people
Room in Birmingham, MI. In addition, Senator Gilda Z. Jacobs visited
with scleroderma and their
during this event to learn about how scleroderma impacts the lives
of people in Michigan and to share tips with us on how we can work families; to stimulate and
collaboratively with our legislators to encourage support for our cause. support research designed
Our Chapter thanks each of our presenters and all of our attendees for to identify the cause and
their participation! cure of scleroderma as
well as improve methods of
We invite you to please join us for two more Patient Education Days to be held this year:
treatment; to enhance the
Sunday, March 9; 1-3 pm public’s awareness of this
Location: West Bloomﬁeld Library disease.
Dermatologic Aspects of Scleroderma
Presented By: Earl Rudner, MD Board of Directors
Skin care can be challenging for anyone, and it’s particularly challenging for people affected by
scleroderma. Dr. Rudner, Vice Chairman, Department of Dermatology, Wayne State University School of
Medicine, will present speciﬁc treatment modalities that address some common skin care issues that arise President:
as a result of symptoms of scleroderma. Sharon L. Noechel
Wound Care: What Do I Do When My Wound Won’t Heal? Richard A. Green, CPA
Presented By: Kathy Selden, RN, BSN Secretary:
Wound care is a primary concern for many people with scleroderma. Kathy Selden, RN, BSN, Clinical Mark Saidman, DDS
Manager, Mt. Clemens Regional Wound Treatment Center, will explain reasons that a wound doesn’t heal
naturally and when it is advisable to seek a specialist in wound care to deal with wounds that just won’t Directors:
heal. She looks forward to giving you practical advice and potential treatment plans that a specialist in Linda Hendrickson
wound care would be likely to develop including the very latest in cutting-edge wound care treatments.
Sunday, May 4; 1-3 pm Teckla Rhoads
Location: Chapter Ofﬁce
Panel Discussion with Patients and Physicians Elena Schiopu, MD
This panel will feature both people living with scleroderma and physicians who specialize in treating Kim Stine
scleroderma for an interactive discussion allowing guests to ask questions and receive answers on practical Patricia Thomas, PhD, RN
topics for which they seek counsel on. Kerrie Trompics
PLEASE KINDLY NOTE: Delicious snacks and beverages will be served at all meetings. Participation is free Annie Valle
to all members; $10 each for others. Not sure if your membership is current or would you like to become a
member? Contact us at 248.865.7259 for details!
RSVP TODAY! Board
You can RSVP for attendance at our Patient Education Days in three easy ways:
Henry W. Lim, MD
By Mail: Registration form may be downloaded at www.scleroderma.org/chapter/michigan.
Richard W. Martin, MD
By Fax: Fill out the registration form and fax it to us at 248.865.7523.
Vallerie V. McLaughlin, MD
By Phone: Please phone us at 248.865.7259 and we’ll register you with one simple call.
Tammy Clark Ojo, MD
Melvyn Rubenﬁre, MD
Earl Rudner, MD
MAKE MEMBERSHIP WORK FOR YOU! Mark Saidman, DDS
One of our Chapter’s most important initiatives in 2008 is increasing our Delﬁn Santos, MD
membership. Membership is a mutually beneﬁcial way to beneﬁt yourself and Elena Schiopu, MD
your Michigan Chapter of the Scleroderma Foundation. Lisa Zemens, DDS
Membership with our Chapter has wonderful beneﬁts! For just $25, you can become a member, which
includes a complimentary subscription to the National Scleroderma Foundation’s quarterly magazine, the
“SCLERODERMA VOICE,” an outstanding publication dedicated to bringing you up-to-date information on Staff
scleroderma news, information and research. Executive Director:
It also provides you with complimentary entrance to our Patient Education Days held in 2008. Jennifer A. Viano
Membership levels at $50 and above offer enhanced beneﬁts including complimentary tickets to our annual
walk, our new Fall educational event, scleroderma merchandise and much more. Coordinator:
If you would like to become a member, check your membership status or want details on membership beneﬁts, Executive Assistant:
please contact our ofﬁce at 248-865-7259 or email us at MIChapter@scleroderma.org, and we’ll mail you a
membership package. You can also learn more by visiting www.scleroderma.org/chapter/michigan.
Sharon L. Noechel
Scleroderma Foundation Michigan Chapter
It is an extreme honor to be able to serve as your
Chapter President for the 2008 year.
As always, I, as well as everyone associated with the Scleroderma
Foundation, would like to thank you for your unwavering support
throughout this past year.
Once again, our Dinner, Dancing and Diamonds Gala was a
great success! I thank you for making me the recipient of the Spirit
of Hope Award. I was proud to receive the award and grateful
to have shared that moment in the company of my family and
friends at the Gala. We all had a great time.
Due to the generosity and compassion of all of our supporters, we
continue to excel each year in fundraising, which helps our Chapter
in so many ways from education, awareness, support groups and,
of course, raising funds to help us ﬁnd a cure. Please help me in
continuing to increase public awareness of scleroderma.
This year, our Annual Walk will be held at the Detroit Zoo. We
expect to have a great turn out, and I look forward to seeing you
Once again, I thank every person who has given their support
whether it was through a donation, coming to a support group
meeting, attending the Annual Walk or Gala or simply through
your thoughts and prayers. Every bit counts in our battle to cure
What is Scleroderma? The Scleroderma Foundation Michigan Chapter thanks Actelion
Pharmaceuticals for their outstanding support of the Foundation and
our Chapter as National Platinum Sponsor.
Scleroderma is a chronic, autoimmune connective
tissue disease, and the word scleroderma literally
means hard skin. Executive Director’s Report
Jennifer A. Viano Executive Director
Common symptoms include hardening and
At the start of a new year and in reﬂecting on the past
thickening of the skin, one of the most visible year, I extend my heartfelt thanks and gratitude to all of
manifestations of the disease. Other symptoms our supporters for making 2007 a fantastic success for
include Raynaud’s disease (abnormal sensitivity our Chapter!
to cold in the extremities), swelling of the hands
Your support in 2007 helped accomplish signiﬁcant achievements
and feet, pain and stiffness of the joints, joint
including growth in vital areas of our organization including programs
contractures, digestive system and gastrointestinal and services offered to patients and caregivers, fundraising, capacity
tract problems, oral, facial and dental problems, building, leadership and research funding.
and kidney, heart and lung involvement.
As we continue to enhance the services we provide to our constituents
and as scleroderma becomes better recognized, we anticipate that the
Characteristics of the disease include an over- need for our services will continue to grow, so please know how vital your
production of collagen and damage to blood continued support is now and will continue to be in years to come.
vessels. Approximately 300,000 people in the
United States suffer from scleroderma. Scleroderma In 2008, we have exciting and fun ways for you to continue and
enhance your support of our cause. One of those support opportunities
primarily affects women between the ages of 25 is becoming involved in our 29th Annual Walk and Run, which is our
and 55. There is currently no known cause or cure. Chapter’s biggest fundraiser. It will be held on Sunday, June 8, 2008 at
the Detroit Zoo, and I hope to see you – and all of your friends and family
– to celebrate our cause.
DISCLAIMER: The Scleroderma Foundation in no way endorses Throughout this newsletter – and by visiting our website – you will ﬁnd
any drugs, treatments, physicians, individuals or organizations many more ways to be involved, as well.
reported in this newsletter. Material presented in this newsletter
is for informational purposes only. Because the manifestations In closing, THANK YOU for making 2007 a year of tremendous impact and
and severity of scleroderma vary among individuals, success for our Chapter. With your continued commitment and support,
personalized healthcare management is essential. It is strongly our dedicated team of board members, staff and volunteers will continue
recommended that all drugs and treatments be discussed with advancing our mission with compassion, care and an unwavering
the reader’s physician(s) for proper evaluation. commitment to ﬁnding the cause and cure of scleroderma.
Page 2 The Scleroderma Source Spring 2008
Restylane and Scleroderma PISTONS GAME HELPS RAISE AWARENESS & FUNDS
On Friday, December 7, 2007, approximately 50
I have systemic scleroderma and would like to have a Chapter supporters visited the Palace of Auburn
cosmetic procedure to help with the lines around my Hills for an exciting Detroit Pistons game where the
mouth. I have heard that Restylane is good for this. Can team’s Community Relations Department designated
I have this procedure if I have scleroderma? us a featured charity beneﬁciary of a
50/50 rafﬂe! Approximately $500 was
extended to our Chapter through
Restylane is a dermal ﬁller that is commonly used to the rafﬂe to support our mission.
improve the appearance of deep wrinkles and lines
(for example, those around the mouth). It can be Although the Pistons did fall to Big
quite effective when properly used. Patients have to Ben and the Chicago Bulls, our guests
- donned in Scleroderma Foundation-
understand that the improvement is not permanent, themed shirts and hats - enjoyed the game
that it needs to be reinjected after a few months, and and helped spread the word about scleroderma as
that there is some discomfort and pain associated with attendees visited our concourse table and purchased
the injection. Those who are prone to “cold sores,” rafﬂe tickets.
a common manifestation of herpes infection on the
One very special highlight was having children
lips or around the mouth, should probably receive supporters of our Chapter help welcome Pistons
prophylactic treatment with an antiviral medicine players through the fan tunnel at the start of the
before the injection. It is my opinion that it is safe to game - thank you to all of our young supporters
use in scleroderma patients and can improve their who participated in the tunnel!
appearance. Our Chapter thanks each and every person who
purchased a ticket and enjoyed the game with
Vincent Falanga, M.D. us. Thank you so much for your support!
Originally published in “Scleroderma VOICE,” March 2007
SAVE THE DATE AND PURCHASE YOUR
TICKETS NOW FOR THE NEXT DETROIT
PISTONS GAME FEATURING OUR CHAPTER!
JOIN A SUPPORT GROUP!
Join us on Saturday, March 29 at 7:30 p.m. for our
Support groups offered through next Detroit Pistons game! Come celebrate our
cause with fellow Chapter supporters as we rally
the Scleroderma Foundation for the Pistons while they battle it on the court
Michigan Chapter provide against the Cleveland Cavaliers.
people affected by scleroderma
with a forum to share feelings, Highlights for our involvement at the game will
concerns and information as well include having a concourse table/display, enter-
to-win contest for a special prize and participation
as a place to offer peer support in a kids’ tunnel to welcome Pistons players on to
and encouragement. Support groups are free of charge the court!
and open to everyone.
Tickets are limited so book yours today! They are
We encourage you to attend one of our groups in: $45 each and can be purchased by contacting
Janus Landrum at 248.865.7259 or via e-mail at
Ann Arbor/Washtenaw Livonia
CALENDAR OF EVENTS
Grand Rapids/Western Michigan Warren Thursday, March 9
Lansing Patient Education Meeting
Saturday, March 29
Please visit www.scleroderma.org/chapter/michigan Detroit Pistons Game
for details on when the groups meet, the support group
Sunday, May 4
leaders, their contact information and the location of Patient Education Meeting
Friday, June 6
Support groups often feature speakers specializing Fourth Annual Drive for a Cure Golf Tournament; Grand Rapids, MI
in scleroderma or related topics. To ﬁnd out more Sunday, June 8
information about upcoming speakers or meeting 29th Annual Walk and Run; World-Class Detroit Zoo, Royal Oak, MI
topics, please contact the support group leader or Carol
Friday, July 25 - Sunday, July 27
Hilf, Patient Services Coordinator, at 248.865.7259. Scleroderma Foundation’s National Conference; Los Angeles, CA
Sunday, September 21
MATCHING GIFTS! Fall Educational Event
Many employers sponsor matching gifts programs and
will match any donation you make to us whether for the Saturday, November 22
walk, gala, a tribute or annual fund gift. Contact your Third Annual Dinner, Dancing and Diamonds Gala; Royal Park Hotel,
employer’s HR Department for matching gift paperwork Downtown Rochester, MI
and/or phone us at 248.865.7259 for assistance. Your For more information and details on these events, please contact our
gift to the Scleroderma Foundation MI Chapter could ofﬁce at 248.865.7259, via email at MIChapter@scleroderma.org or visit our
be doubled! web site at www.scleroderma.org/chapter/michigan.
Spring 2008 The Scleroderma Source Page 3
An Introduction to the Clinical Trial Process:
Demystifying the Process of Participating in Medical Studies
Originally published in “Scleroderma Voice,” 2004 #3*
There Are Now More Scleroderma-Related Studies has been determined to have strong potential, drug’s effectiveness, beneﬁts, and the range of
Than Ever it begins to be prepared for human delivery. Pre- possible adverse reactions.
Increasing interest from pharmaceutical and clinical testing takes approximately three to four
biotech companies in developing better years. Most phase 3 studies are randomized and blinded
treatments for the complications trials.
of scleroderma has created Investigational New Drug
an environment in which a Application (IND) Phase 3 studies typically last several years.
person with scleroderma may After completing pre-clinical Seventy to 90% of drugs that enter phase 3 studies
actually choose between trials testing, an Investigational New successfully complete testing.
to participate in. This has not Drug application (IND) must be ﬁled
previously been the case for with the regulatory agency, the Once a phase 3 study is successfully completed, a
scleroderma. U.S. Food and Drug Administration company can request marketing approval for the
(FDA). drug from the U.S. Food and Drug Administration.
The increase in options has
also caused confusion among The IND outlines the results of New Drug Application (NDA)/Biologics License
those who may be eligible for pre-clinical testing and clearly Application (BLA)
participation, because the deﬁnes how future studies will be Once all three clinical trial phases are complete,
process can be daunting and conducted. and if the data demonstrates that the drug is safe
confusing. We hope that you and effective, a New Drug Application/Biologics
ﬁnd this section informative and The FDA has 30 days to review the License Application (NDA/BLA) is ﬁled with the U.S.
that it clariﬁes any questions you IND. If they do not disapprove the Food and Drug Administration (FDA).
may have regarding the clinical IND within that time period, the
trial process. drug can move on to a phase 1 trial This NDA/BLA must contain all of the scientiﬁc
where it can be tested in humans. information compiled over the course of the
However, we understand that individual trials.
circumstances are unique, and it is an extremely Phase 1
personal decision when one chooses to In a phase 1 clinical trial, the primary goal is to The FDA is allowed at least six months to review
participate in a clinical trial. It is also one that assess the drug’s safety. the NDA/BLA. However, this review process can
should be discussed in great detail with your sometimes take up to two years, depending on
healthcare provider, because everyone’s own For the ﬁrst time, the drug is introduced to humans, the procedures set forth by a speciﬁc country.
unique health care history and circumstances with tests occurring in a small number of healthy
should be considered. volunteers (20 to 100). Approval
Once the U.S. Food and Drug Administration
An Introduction to the Clinical Trial Process The study is designed to determine how the approves the NDA/ BLA, the drug becomes
A clinical trial is a research study performed with human body reacts to the drug and, speciﬁcally, available for physicians to prescribe.
humans to determine if a new drug or therapy is what side effects occur as dosage levels are
both safe and effective for treating a disease or increased. Although the product is approved, it must
condition. All clinical trials are based on a set of continue to comply with regulatory requirements
rules called a protocol. A protocol describes what This initial phase of testing typically takes several over time. For example, all cases of adverse events
types of people may participate in the trial; the months to a year. About 70% of experimental caused by the drug must be reported, and quality
schedule of tests, procedures, medications, and drugs pass this initial phase. control standards must be met. In some cases, the
dosages; and the length of the study. regulatory agency will also require post-marketing
Phase 2 studies to evaluate the long-term effects of the
Clinical trials are carried out in steps called phases. Once a drug has been shown to be safe, it must drug.
Patients may be eligible for studies in different be tested for effectiveness.
phases, depending on their general condition, Post-Marketing Studies
the type and stage of their disease, and what Most phase 2 studies are randomized trials. This Post-marketing studies, also called phase 4 studies,
therapy, if any, they have already had. Trial means one group of patients will receive the can have several objectives.
participants are seen regularly by research staff to experimental drug, while a second “control” 1. These studies are often performed in special
monitor their health and to determine the safety group will receive a standard treatment or patient populations not previously studied (for
and effectiveness of their treatment. placebo (a substance containing no medication, example, pediatric or geriatric).
to create a baseline against which to measure 2. The studies are often designed to monitor a
On average, it takes 12 years for a drug to travel the effectiveness of the drug being tested). drug’s long-term effectiveness and impact on a
through the clinical testing phases to reach patient’s quality of life.
the patient population. Approximately one in Often these studies are “blinded”—neither 3. Many studies are designed to determine the
ﬁve drugs that enter clinical testing is ultimately the patients nor the researchers know who is cost-effectiveness of a drug therapy relative to
approved for patient use. getting the experimental drug. In this manner, other traditional and new therapies.
the study can provide the pharmaceutical or
The following is a description of stages in the U.S. biotechnology company and the regulatory Where can I learn more about clinical trials that
clinical trial process. agency comparative information about the are currently enrolling?
relative safety and effectiveness of this new drug. More information about ongoing clinical trials can
Pre-Clinical Testing be found on the following websites:
Before a drug can be tested in humans, pre- This second phase of testing may last from several National Institutes of Health (NIH):
clinical testing is required. Laboratory studies are months to two years, and involve up to several www.clinicaltrials.gov
conducted to demonstrate safety in humans hundred patients. Only about 30% of experimental Scleroderma Foundation:
and the drug’s ability to ﬁght against a targeted drugs successfully complete both phase 1 and www.scleroderma.org
disease. phase 2 studies.
Do you have more questions? Please contact
Pre-clinical research can take place in one or Phase 3 Carol Hilf, Patient Services Coordinator, at
both of the following media: In a phase 3 study, a drug is tested in several 248.865.7259 or email@example.com.
• In vitro (Latin), meaning “in glass,” also known as hundred to several thousand patients. This
bench research; or large-scale testing allows the pharmaceutical *Due to space limitations, this article was not able to be
• In vivo, meaning “in the living.” This research or biotechnology company and the regulatory printed in its entirety; to receive the full article, please
often occurs in rats and mice. Once the drug agency a more thorough understanding of the contact Carol Hilf.
Page 4 The Scleroderma Source Spring 2008
LEAVING A LEGACY TO HELP OTHERS AFFECTED BY SCLERODERMA
Planned Giving to the Scleroderma Foundation Michigan Chapter:
Leaving a Personal Legacy Through Strategic Giving
Planned giving is a broad term that can be described as an activity utilized by charities and donors that integrates sound personal,
ﬁnancial and estate-planning concepts, which can provide mutual short-term and long-term beneﬁts.
Options for planned giving are many and while a bequest in a will is the most common, life insurance, charitable lead or remainder
trust are other options.
All of these options offer attractive tax advantages and, with effective planning, your personal income needs, family bequests and
other concerns can be strategically addressed in concert with your planned
gift to our Chapter.
We encourage you to please include the Scleroderma Foundation Michigan Please remember the
Chapter in your estate plan. Whether it is through a bequest in your will or
another planned giving option, your gift will allow you to leave a legacy and
help many people now and for years to come who are struggling with the
debilitating effects of scleroderma.
Michigan Chapter in your
estate plan. On behalf of those
If you have included the Scleroderma Foundation Michigan Chapter in your
estate planning or are interested in doing so, please contact Jennifer A. Viano, we serve, Thank You.
Executive Director, at 248.865.7259 or via email at firstname.lastname@example.org.
Beloved Member of Michigan Chapter Leaves Bequest to Help Others
Genevieve Garcia, known fondly remembered by our Chapter and by the many people
to the Michigan Chapter’s whose lives she touched in her gentle and special way.
Downriver Support Group as
“Little Jean,” was a quiet, soft One important way that Little Jean will be remembered is
spoken and gentle person who through a bequest she made to our Chapter.
was close with the Group’s
Leader, Annie Valle, who had Little Jean appreciated how vital funding truly is to help
the pleasure of knowing her people day-to-day who are suffering with their own battle with
over the course of three years. scleroderma and to ﬁnd the cure for the disease. She made
plans before her death to remember, honor and help the people
Annie ﬁrst met Little Jean at the of our Chapter and, through far-reaching research efforts,
group’s ﬁrst meeting at Oakwood people across the world who stand to beneﬁt from promises
Hospital in Allen of improved treatment and, as we all
Park along with hope, a cure for scleroderma.
her nephew, Jim
“Little Jean appreciated how vital
Stefanek, who funding truly is to help people This gift from Little Jean speaks to
Genevieve Garcia drove her to and day-to-day who are suffering with the deep commitment she had to
from the meetings. their own battle with scleroderma help our Chapter succeed, thrive
Little Jean thought the world of Jim. and continue providing assistance
and to find the cure for the disease.” to those who rely on us as a valuable
At one point, Little Jean stopped coming to resource in their lives.
meetings due to complications of scleroderma.
Annie kept in contact with her to see how she was feeling. Commenting on this gift, Annie, currently a board member of
Her response was always the same, “Oh honey, things could our Chapter, explains what the gift will mean for the Michigan
be better, but I’m doing okay.” She appreciated Annie taking Chapter. “Little Jean’s gift means a great deal to our Chapter
time to call and, as she put it, “talk to this old lady.” Annie as it will allow us to reach greater heights in our efforts to
would always assure her that she enjoyed her conversations advance our three-fold mission of support, education and
and the laughter they shared. research. I promised her that I would always work hard to
continue to build awareness for scleroderma and that I, too,
As Little Jean’s symptoms worsened, a few of the support hoped we would ﬁnd a cure soon. This generous gift from
group members visited her in the hospital. She thanked her Little Jean means a lot to me personally, and it’s one more
friends during that visit and her last words as they departed way that she has left an imprint on my life and the lives of so
were incredibly poignant: “I know it’s too late for me, but I many who knew and loved her.”
hope they ﬁnd a cure for scleroderma in your lifetime.”
“She made plans before her death to remember,
Shortly after that visit, Little Jean lost her battle with scleroderma. honor and help the people of our Chapter.”
Scleroderma may have taken her life, but she will certainly be
Spring 2008 The Scleroderma Source Page 5
MEDICAL ADVISORY BOARD CORNER
Questions and answers with Melvyn 6. How and when is pulmonary hypertension treated?
Rubenﬁre, MD, a member of the a. The ﬁrst step is to determine the speciﬁc cause, which should be
Scleroderma Foundation MI Chapter’s done by a specialist.
Medical Advisory Board. Dr. Rubenﬁre b. Prior to deciding treatment, a right heart catheterization with an
is Director, Preventive Cardiology, assessment of pulmonary artery spasm (like Raynaud’s) is done to
and Professor, Department of Internal assess the function of the heart, the prognosis, and best treatment.
Medicine, University of Michigan Health 7. How do you determine the seriousness of PH?
System. a. The symptoms, ﬁndings on the echocardiogram, and heart
function on the right heart catheterization provide information on
1. What exactly is pulmonary hypertension prognosis and each helps select treatment options.
and how does it relate to scleroderma? b. A six-minute hall walk with monitoring of the blood oxygen is used
Pulmonary hypertension (PH) refers to an to determine the patients’ functional capacity which correlates
Melvin Rubenﬁre, M.D. elevation of pressure in the arteries of the with outcomes.
lungs. It occurs in about 1⁄2 of the patients c. BNP and NT-proBNP are blood tests that help assess the stress on
with limited scleroderma and less often in the heart, prognosis, and response to treatments.
systemic scleroderma. 8. What are the FDA approved treatment options?
2. Why does pulmonary hypertension occur in scleroderma? a. The simplest treatment is a calcium channel blocker drug that
a. The most important is the thickening and closure of the very small is also used for Raynaud’s phenomenon. But these drugs are
arteries in the lung, which results in pulmonary arterial hypertension. reserved for the less than 5-8% of patients who have mild pulmonary
Much rarer is the involvement in the pulmonary veins. hypertension and evidence on the right heart catheterization that
b. When pulmonary (lung) ﬁbrosis or inﬂammation occurs it is the PH is reversible.
often accompanied by mild to moderate changes in the small b. There are 2 other categories of pills for PH. RevatioTM, which
pulmonary arteries. but for the dosing is identical to ViagraTM. It can be effective
c. Scleroderma can be associated with hypertension or high blood and has few side effects and no toxicity. The other class is known
pressure and thickening or stiffening of the left side of the heart. This as an endothelin antagonist (ETa) of which there are 2 choices:
can result in PH and congestion of the lungs. TracleerTM and LetairisTM. The ETa’s are effective but require
3. What is the importance of pulmonary hypertension? regular monthly monitoring of liver function tests. While not FDA
Pulmonary hypertension is one of the most serious complications of approved, combination therapy may be necessary.
scleroderma and can rapidly progress and result in severe disability c. The prostacyclin family of drugs is very effective but not
and death. available in pill form at this time. Prostacyclins are safe and
4. What are the symptoms of pulmonary arterial hypertension can be administered by inhalation (VentavisTM), intravenously
The most common symptoms are shortness of breath with activity, (FlolanTM and RemodulinTM), and under the skin (subcutaneously,
fatigue, and swelling of the ankles. RemodulinTM).
5. How is pulmonary hypertension detected? d. The decision as to which agent, the best method of administration,
a. The echocardiogram or ultrasound of the heart is a simple test and dosing needs is the responsibility of a physician with extensive
that can readily detect PH. experience in PH.
b. Patients with symptoms should be screened with an e. The PH-speciﬁc drugs are very costly, ranging from $10,000 to
echocardiogram. A yearly evaluation should be considered in all $200,000 annually. Regardless of the choice of treatment, close
patients with scleroderma so that PH can be detected in an early follow up is necessary to assess response to therapy and alternative
stage. dosing and drugs.
Scleroderma & Calcium Deposits
By Laura Carbone, M.D., Associate Professor of Medicine, University of Tennessee Health VOLUNTEER
Science Center (originally published in Scleroderma Voice, 2004 #1)
Q. My mother-in-law has been experiencing painful calcium deposits in her ﬁngertips
over the last 8 months. It is becoming more uncomfortable for her and she notices after
having her hands in water the pain is increased. Sometimes she cannot stand the pain Contact us at
and will poke a hole in the painful area to drain it, but it keeps coming back.
248.865.7259 to learn
I read that a possible treatment is minocycline. She was part of a group study for
minocycline some years ago, and she developed very painful mouth sores because of it more about how
so this is not an option for her. Have there been any improvements to this drug, or are there
any alternatives to managing this painful complication? I want to help her so much.
you can make a
difference with us as
A. I can certainly understand your wanting to help your mother-in-law with this. Calcinosis
can be a very painful and debilitating condition. a volunteer. We are
I would suggest she not “poke holes” in the area herself, because infections may develop. always looking for
A recent report does suggest low-dose minocycline may be helpful for calcinosis in
patients with scleroderma but more work in this area is needed.
volunteers to help at
our ofﬁce or join one
Some reports have suggested that diltiazem, a blood pressure medicine may help, but
this has yet to be conﬁrmed in any large-scale studies. of our committees.
Although older reports suggest warfarin, a blood thinner, might help, this has not been
We hope to hear
shown to be true, and is not generally recommended. from you soon!
Unfortunately, we do not yet have a good, safe treatment for calcinosis that has been
conﬁrmed by large studies.
Page 6 The Scleroderma Source Spring 2008
Personal Journey: Brian Smith
My name is Brian Smith, and I at the Visteon cafeteria, a group of 8 of Rob’s colleagues
lost a dear friend, Rob Stone, to collected over $1,000 in employee donations for the Scleroderma
scleroderma. I have now been given Foundation.
the privilege of writing a few words to
tell his story. Rob was a friend to all and is sorely missed. Rob will never be
forgotten as we will celebrate his life and the way he lived his
Rob’s struggle with scleroderma, life forever!
although sad and painful, has
motivated and inspired many of his For each reader of this newsletter, my message to you is to
family and friends to cherish life, each cherish each day of your life and those in it. You may have
other, and to help as many people as scleroderma – or you may be touched by the life of someone who
possible while living life to the fullest. has it – and, in either case, you can make a difference in every
day of your life, just as Rob did, and as so many of his friends and
Rob Stone First, a little bit about Rob. Rob was family have in his memory.
always an outgoing and happy
person who loved to live life and help everyone who came in I, along with my friends, family and colleagues at Visteon have
contact with him. He shared happiness so easily with a warm received so much through helping others by participating in
smile, laughs, and genuine desire to listen and make someone’s activities held by the Scleroderma Foundation and by organizing
world better than the minute before. our own workplace beneﬁt for Rob. I encourage you to do the
His giving had no bounds as he honored a relative who had lost
their battle with another disease by holding a yearly golf outing Together, we are
and collecting funds for that cause for many years. Now his helping people cope
friends and family are doing the same for Rob by continuing to with scleroderma while
honor his life by ﬁnding ways to help ﬁght scleroderma. striving to ﬁnd the cure.
I know in my heart that
After Rob was diagnosed with scleroderma, he had to change his Rob feels the same
life to adapt. Instead of giving up and staying indoors to brood and is smiling on our
over his unfortunate situation, Rob made the most of his life. efforts.
Rob was a coach for his kids’ hockey team, and he just loved this
2006 Escape Run in
aspect of his life! His fondness for hockey combined with his love
Honor of Rob with the
for his kids was all channeled into this team. All of the kids on the
“Go Spartans!” Theme
team loved him for his kindness and generosity, but his stamina
and ability to cope with the cold of the rink became much more
difﬁcult with scleroderma.
Instead of quitting, Rob requested another coach to come and
help him lead the team. He still coached from the stands, all
bundled up to endure the sensitivity of the cold. After a game,
he would visit a restaurant with family
and friends and found creative ways
to keep circulation in his hands ﬂowing
by requesting cups of hot water. Rob
didn’t know how to quit and, somehow
even when his friends and family
came to his aid, he was still the person
motivating us all with his warm humor
and genuine love for people.
At the ﬁrst annual Escape Run held
by the Chapter, after I ﬁnished the run,
I saw Rob walking from the parking lot
on the warm Fall day in 2005. He had
heard I was running the race to support
the cause, and decided to make the
trip to come out and say hello. I hadn’t
visited with him for some time, but Rob
made me feel like we had been best
friends forever. His way with words
Rob and I at the September
and genuine warmth were contagious
2005 Escape Run
and brought out the best in everyone
he touched. We sat and chatted for
3 full hours that day after the race. I only saw Rob one more time
before he passed away, and I cherished the memories we made
that day. I have since run in the 2nd and 3rd annual Escape Run to
honor Rob, our friendship, and the cause.
Rob lost his ﬁght in 2006, and his friends picked up his spirit and
memory to carry on his zest for life by arranging a donation
campaign at Visteon, where Rob worked. Over a 2-day period
Spring 2008 The Scleroderma Source Page 7
2008 Fall Patient Education Event
Feeling Better About Living with Scleroderma:
Learning Techniques to Conquer Depression and Improve Self-Conﬁdence and Self-Image
Sunday, September 21, 10 am -2 pm
Featured Topic One: To help you improve your self-conﬁdence and self-
image, we’ll be welcoming health, beauty, ﬁtness and
Conquering Depression wellness experts (to be announced
People affected by scleroderma explain to us that soon!) who will give you practical
often they feel depressed and sometimes lack the tips on topics such as selecting and
mental strength to cope with the overwhelming nature applying the right make-up for you;
of this disease. During this interactive session, an expert learning about the best clothing
speaker on depression will discuss practical tips for colors to wear to complement your
conquering depression. This expert will share insight and skin tone and hair color; the hairstyle
offer counsel on ways that you can overcome your that will make you look your best; and
depression allowing you to live a healthier, happier and exercise/ﬁtness/nutrition tips to help you feel your best
fuller life despite the challenges you encounter living each day.
We also plan to engage support from our experts for
special offers that you can use after the event for their
Featured Topic Two: services.
Improving Self-Conﬁdence & Self-Image
When you look and feel your best, your overall health
The content of this presentation is admittedly geared is shown to improve, and we think this is particularly
more toward women, but we hope that women and important when dealing with a chronic illness like
men alike will learn helpful tips on how to improve self- scleroderma.
conﬁdence and self-image.
We encourage you to RSVP for this event TODAY and
look forward to having you with us!
Notice About Hope, Health and Healing Conference PLEASE KINDLY NOTE:
The Scleroderma Foundation Michigan Chapter will not Delicious snacks and beverages will be served.
hold a 2008 Hope, Health and Healing Conference. The Seating is limited; venue to be announced soon.
Conference will now be scheduled every other year with the Participation is free for members at $50 or above;
next Conference to be held in Fall 2009. The Chapter will $10 each for others.
offer a special patient-focused event in the Fall in years in Not sure if your membership is current or would you like to
which the Conference is not held such as the one featured become a member? Contact us at 248.865.7259 for details.
in this ﬂyer. Check our website often for updates on this event!
RSVP Today! Scleroderma Foundation Michigan Chapter
30301 Northwestern Highway, Suite 300
You can RSVP for attendance at this event in three easy ways: Farmington Hills, MI 48334
BY MAIL: Simply ﬁll out a registration form and return it to us via
US Mail. Registration forms are included with mailings we send or Toll Free: 800.716.6554
may be downloaded at www.scleroderma.org/chapter/michigan. Phone: 248.865.7259
BY FAX: Fill out the registration form and fax it to us at 248.865.7523.
BY PHONE: Please phone us at 248.865.7259 and we’ll register you MIChapter@scleroderma.org
with one simple call. www.scleroderma.org/chapter/michigan
Page 8 The Scleroderma Source Spring 2008
Personal Journey: Tom Cornell
After enjoying good The rheumatologist quickly diagnosed a normal life without experiencing severe
health for the nearly my ﬁnger problem as Raynaud’s pain in my ﬁngers and without bandaged
60 years of my life, disease secondary to a disease named ﬁnger tips. Other CREST symptoms slowly
my ﬁngertips became scleroderma. I had never heard of this developed. By this time I had met other
very sensitive and this disease. My doctor explained that it is scleroderma patients at chapter events
was accompanied by a relatively rare disease that is caused and learned that these symptoms were
a tingling sensation by an autoimmune system disorder. He treatable and manageable. The medical
in my ﬁngers. As days went on to explain that I had a form of seminars hosted by the foundation gave
went by the sensitivity the disease identiﬁed with the acronym me up to date information from the top
became pain and my ﬁngertips turned a CREST. He prescribed a vaso-dilating scleroderma researchers in the country
dark blue color. medication and ordered further testing. and they presented new techniques for
He also referred me to the Michigan managing the disease.
I sought treatment from my family Chapter of the Scleroderma Foundation.
physician who ordered various diagnostic I was put in contact with the Livonia support
tests over the next few weeks. In the I immediately contacted the Chapter group. This gave me the opportunity to
meantime the condition of my ﬁngers seeking information and advice about share with other patients the experiences
worsened. Open sores formed on my ﬁnger my disease. At the time I was frightened of living day-to-day with scleroderma.
tips and the pain became excruciating. and I was imagining the worst possible
outcomes of my disease. The people I appreciate the Scleroderma Foundation
My family physician was stumped and he I spoke to at the Chapter assured me for the assistance and hope that it has
referred me to a peripheral circulation specialist that I would be able to manage my provided me since I was diagnosed with
at a local hospital. More tests followed and scleroderma and my life as I knew it the disease almost ten years ago. I also
the condition of my ﬁngers grew worse as was not over. They provided me with appreciate the funding that is raised
infections developed around my ﬁngernails. information about the disease and through the hard work of the chapter that
I worried that the blackness developing techniques for managing the symptoms. funds research and will ultimately lead
under my nails indicated gangrene. I ﬁnally This was a great relief to me. The Chapter to a cure for the disease. I, along with
demanded that the doctors treating me do provided me with literature and other other chapter members, participate in
something quickly before I totally lost the use resources to help me better understand programs for the medical community to
of my ﬁngers. After a disastrous experience the disease. raise their awareness of scleroderma. This
following an angiogram (I had a major hopefully will lead to quicker diagnosis
allergic reaction to the iodine dye used) I As time passed my ﬁngers began a and treatment for patients presenting the
was referred to a rheumatologist. healing process and I was able to resume symptoms of scleroderma.
Approximately 40% of daily, and they are worsened by cold weather. Digital ulcers can
people with scleroderma occur at anytime of the year and in any weather. The ﬁngertips in
develop open sores on scleroderma should be cared for in much the way a patient with
their ﬁngertips called digital diabetes might care for their feet:
ulcers. In some patients, • Keep the skin moist and supple. Hand creams rich in lanolin can
this is a major ongoing help.
difﬁculty whereas in others • Protect the ﬁngertips. Avoid tasks that risk ﬁngertip trauma.
digital ulcers are an • Treat cuts promptly and thoroughly. Don’t let infection get
uncommon and short-term established.
complication. • Control your Raynaud’s symptoms effectively. This requires
working closely with your physician to choose the best
Referencing the photo medication regimen.
in this article, this person • Keep your physician involved. Let him or her know when an
has an ulceration on the tip of her index ﬁnger. The other ﬁngers ulcer has started. The earlier it is treated the better the outcome.
appear unaffected. There is also a scar in her palm from a previous
operation called “selective digital sympathectomy” in an attempt The scleroderma research community is actively investigating
to improve ﬁngertip blood ﬂow. treatments for digital ulcers. In Europe, intravenous iloprost
(Ilomedin®) is approved and widely used, although this therapy is
Digital ulcers occur because of poor blood ﬂow to the ﬁngertips, not available in the U.S. Recent studies with bosentan (Tracleer®),
which is in turn related to the narrowing of blood vessels that is an agent approved by the FDA for pulmonary hypertension, have
present in all forms of systemic scleroderma. suggested an effect in preventing digital ulcers. Other research
projects are in early stages of planning.
Digital ulcers are tightly linked with Raynaud’s Phenomenon
(sensitivity to cold). They both occur in scleroderma patients Source: Scleroderma Program at the University of Michigan
because of narrowed blood vessels. Raynaud’s attacks occur
Scleroderma Physician Information Corps
Would you like to be part of our Scleroderma Physician Information This is your chance to tell/show the medical community about
Corps? We are looking for a few good volunteers to participate in what scleroderma looks like, how to best treat their patients who
this program, which has been established in an effort to increase have scleroderma and how you have been treated.
the knowledge of new physicians in our state about scleroderma.
If you agree to be part of this group, your name would be put on a
Speciﬁcally, people who join in this effort are people willing to meet list to be contacted in the event of a teaching opportunity in your
with medical students to tell them about how scleroderma affects area (please note that we in no way guarantee participation).
their health and their daily life. Because scleroderma presents itself
in so many different ways, we would like these doctors to see the To sign up, please contact Carol Hilf, Patient Services Coordinator,
disease from many points of view, and you can help us do that! at 248-865-7259/800-716-6554 or email@example.com.
Spring 2008 The Scleroderma Source Page 9
GREATEST 5K EVER:
Some people with scleroderma will report a ﬁngernail that appears to be
separating from the nail bed. This is called onycholysis, and can occur due HUGE SUCCESS
to Raynaud’s Phenomenon or systemic disease such as scleroderma.
A big congratulations and thank-you
Patients are advised not to trim or push back their cuticles. However, if you to Mr. Joe Brennan, who, along with
decide to do so, be very careful not to traumatize the surrounding tissue, his family and their foundation, The
which could lead to a non-healing ulceration or possibly infection. Help Fight Scleroderma Foundation,
organized the First Annual Greatest
If you visit a nail technician for your nail care, always educate them 5k Ever, a charity run to beneﬁt our
about your scleroderma and Raynaud’s Phenomenon. Your technician Chapter. Held on Saturday, October
will need to be gentle and vigilant so they do not scratch your ﬁngers 6, 2007 in Grand Rapids, it was a HUGE
or toes. The few minutes it will take to educate the service provider can success!
save you weeks or months of discomfort.
On a fabulous Fall morning 266 runners
gathered at Riverside Park to enjoy this
competitive run on a USATF Certiﬁed
Mood One Day Predicts Pain the Next Course. Live music, hot breakfast
buffet, post-race party, medal and
If you were upbeat and chipper yesterday, chances are you have a cool New Balance long-sleeve
28 percent less pain today. The opposite holds true, too: If you were technical shirt were all offered to each
down in the dumps yesterday, you may have more pain today. The registrant.
ﬁndings come from a study of 94 adults with rheumatoid arthritis
(RA) who kept daily measures of pain and emotions for 30 days. The The event raised approximately
researchers – two of whom are funded by the Arthritis Foundation – say $18,000.
day-to-day regulation of negative or positive mood is a key variable
for understanding how people with RA experience pain and may Want to participate in this year’s
become an important treatment target. Greatest 5k Ever? Stay tuned to our e-
letters and website and also visit www.
Source: Pain; published online ahead of print helpﬁghtscleroderma.com for details!
Rice University Breakthrough Could Prevent Multiple Fibrotic Diseases
The Scleroderma Foundation Michigan Chapter’s fundraising Fibrosis occurs when the body’s natural healing process goes
efforts on behalf of the national Scleroderma Foundation awry, creating extra scar tissue that does more harm than good.
help fund research projects and support researchers who There are dozens of ﬁbrotic diseases including scleroderma.
have identiﬁed novel approaches to solving the mysteries of The tests found that SAP treatment protected animals from
scleroderma. developing dangerous scar tissue.
In 2004, the Foundation chose to help fund the promising work Gomer and fellow researcher Darrell Pilling, Ph.D. said SAP is a
of Richard Gomer, Ph.D., of Rice University in Houston, Texas naturally occurring protein that circulates in the bloodstream and
to test a naturally occurring substance, Serum Amyloid P for plays a crucial role in regulating wound healing. SAP’s role is to
its potential as a diagnostic and therapeutic agent in treating inhibit the activity of immune cells called ﬁbrocytes, which make
ﬁbrosis, the primary cause of damage in all the sclerotic and excess collagen that the body uses to heal wounds. Gomer said
ﬁbrotic diseases. the tests at Rice show that SAP therapy was very successful in
preventing ﬁbrotic scarring.
Below please reference details on an exciting example of what
our ﬁnancial support is achieving. We should all be proud of He said SAP research in his lab began in 2001 after a meeting
what we are accomplishing together! between himself and UK immunologist Pilling. Just a few days
after beginning their collaboration, the pair noticed a clear
A scientiﬁc breakthough at Rice University could lead to the ﬁrst interaction between the presence of serum and ﬁbrocytes, and
treatment that prevents the build-up of deadly scar tissue in a within months had isolated the active component as SAP. They
broad class of diseases. immediately recognized the importance of the ﬁnd.
“Fibrotic diseases kill so many people because they can crop up Stressing how excited he is, Gomer described how he and Pilling
in almost any part of the body, and cardiac ﬁbrosis is a particular both abandoned well-recognized research in other ﬁelds to
problem for anyone who’s had a heart attack,” said Richard move forward with their ﬁndings.
Gomer, Professor of Biochemistry and Cell Biology at Rice. “We’ve
discovered a naturally-occurring blood protein that prevents “My previous work was a lot of fun, but I just couldn’t see myself
dangerous scar tissue from forming.” spending the time on it when thousands of people were dying
every day from these diseases,” Gomer said.
The protein which is called serum amyloid P, or SAP, has proven
effective at preventing ﬁbrotic disease from developing in the Gomer and Pilling’s research is funded by the National Institutes
hearts and lungs of lab animals and Gomer and colleagues hope of Health (NIH) and was also funded by the Howard Hughes
it will eventually save thousands of lives once it is developed for Medical Institute and the Scleroderma Foundation.
Page 10 The Scleroderma Source Spring 2008
SUNDAY • JUNE 8 • 2008 Raise Pledges!
When you raise pledges
at the WORLD-CLASS DETROIT ZOO at leadership levels,
Registration: 7 am • One Mile Run for Kids: 8 am • Walk: 8:30 am you will earn
5K Run: 8:45 am • Activities: 8 am - 1 pm
rewards in two
Join us with friends, family and everyone you know for exciting ways:
a fabulous, fun-filled day at the World-Class Detroit Zoo BUCKS!
as we walk together to find a cure for scleroderma! For every $1,000
The Scleroderma Foundation MI Chapter looks forward to welcoming you, your family, you raise, we will give
friends, co-workers and everyone you know to a destination more spectacular than any you $25 in scleroderma bucks. Raise
other we’ve walked in - the fabulous Detroit Zoo! $2,000 and you receive $50 in bucks;
Highlights include a celebrity guest appearance by Barry Sanders and other local celebrity raise $5,000 and receive $125 in
guests*, two-mile walk through the Zoo, 5k run, 1-mile run for kids, silent/live auctions, rafﬂe, bucks; raise $10,000 and receive
kidzone with clown, magician, kids’ auction and face painting and more, breakfast/brunch
buffet, complimentary massages, live music, contests with extraordinary prizes and awards $250 in bucks! Bucks can be used
ceremony for top teams/fundraisers. on-site to purchase merchandise in
Registration by May 8 is just $30 per person/$65 for a family of four and includes participation our store and to participate in cool
in the walk and run, NEW signature walk t-shirt, breakfast/brunch, door prize entry and walk activities.
COMPLIMENTARY ENTRANCE TO THE ZOO FOR THE ENTIRE DAY! MEMBERSHIP IN WALK CLUBS!
TOP THREE THINGS YOU CAN DO TO MAKE THIS WALK OUR BEST EVER: Raising pledges at $1000, $5000 or
1. Register! Visit www.ﬁrstgiving.com/29thwalk to register online or download a registration $10,000 earns you membership in
form at www.scleroderma.org/chapter/michigan/2008walk.shtm.
2. Raise Pledges! Visit www.ﬁrstgiving.com/29thwalk to create your personal fundraising walk clubs with rewards including
webpage! Or, phone us at 248.865.7259 to collect pledges with our Pledge-Raiser’s gift certiﬁcates to area retailers,
Package. recognition in Chapter’s Fall 2008
3. Form a Team! Register your team by downloading a Team Registration Form from www.
scleroderma.org/chapter/michigan/2008walk.shtm or by phoning us for one. We will then
newsletter, special club button
send the team captain a Team Package to recruit members and raise pledges as a team! to wear the day of the walk,
complimentary tickets to our Dinner,
Dancing and Diamonds Gala and
LET’S MAKE THIS OUR BIGGEST WALK! more!
This year we aim to welcome 1500 attendees (or more!) so that all of us can join forces with
each other and create something BIG! Our walk has grown each year, and we want our walk
this year to really ‘compete’ with other causes such as the Alzheimer’s Association, which
Bring your whole family
welcomed nearly 4000 attendees to their walk at the Zoo last year. and all of your friends
We want the Scleroderma Foundation MI Chapter to really make a HUGE IMPACT this year
with thousands of people joined together who are all searching for the cure for scleroderma. and “DO THE ZOO” with
You can register TODAY at www.ﬁrstgiving.com/29thwalk! us for our walk!
LET’S RAISE MORE MONEY THAN EVER TO HELP FIND THE CURE!
One of our Chapter’s exciting goals this year with our walk is to raise $100,000-or more-
in pledges, which would be a record for us and would help us fund more in vital medical
research to help ﬁnd the cure. We can achieve this goal together!
Our pledge-raisers receive fabulous rewards, too, when they raise pledges at certain levels.
You can begin raising pledges TODAY by creating your personal online fundraising website at
Please contact Jennifer Viano, Executive Director, at 248.865.7259/800.716.6554 or
firstname.lastname@example.org to receive our brand new Pledge-Raiser’s Package, a cool binder
chock full of pledge-raising resources to help you raise pledges including ﬂyers on pledge-
raising options, rewards, tips, sample letter to solicit pledges and more.
BECOME 1 OF OUR 100! We are recruiting at least 100 people who will make a commitment to
raise a minimum of $1,000 to help us reach our goal of raising $100,000 in pledges.
Each person who makes this commitment will be included in special correspondence
especially prepared for our treasured pledge-raisers. You will be invited to attend a special
pledge-raising party, as well, where we will help everyone gear up for their pledge-raising
efforts in a fun and exciting way. We hope you will be 1 of our 100!
Visit www.scleroderma.org/chapter/michigan/2008walk.shtm for resources & details along the
way. We look forward to having your support as we work together to raise added awareness
and funding to help ﬁnd the cure for scleroderma!
*Not conﬁrmed at time of printing.
Spring 2008 The Scleroderma Source Page 11
QUESTION AND ANSWER WITH CAROL HILF, PATIENT SERVICES COORDINATOR
Q: I have just been diagnosed those that used to give you pleasure
with scleroderma, and I am very • Decreased energy or fatigue
depressed. What can I do to help? • Sleep disturbances
• Feeling helpless, hopeless or worthless
A: I know that your world has just • Loss of appetite, weight loss or gain
been turned upside down, and • Difﬁculty concentrating
when you have been given such • Excessive crying
tough news the emotional turmoil
is nothing less than a roller coaster Your physician or your health plan can refer you to a mental
ride. Denial, sadness, depression, health professional if you wish to see one. Be frank with your
anger are common responses. doctor about how you are feeling. Your doctor can assess your
Managing these emotions will affect emotional state and review your personal and family health
your ability to cope with scleroderma history. If the depressive symptoms are the direct result of your
and improve the quality of your life. scleroderma or of side effects of your medications, your doctor
may be able to adjust or change your treatment. If depression
Carol Hilf My advice is that you cannot is a separate health problem, your doctor may refer you to a
afford to be complacent! You have mental health professional who can prescribe antidepressant
scleroderma. That is a fact. You now must become a warrior! You medications and provide psychotherapy or other treatments.
must become very aware of the nuances of your body. You must
be ever alert to changes. Remember that depressive symptoms, Support groups, either in person or in online chat rooms, offer
such as signiﬁcant weight loss or gain, sleep disturbance, low another valuable source of information and support. I also
energy, apathy, and poor concentration all mimic symptoms encourage you to call or email me! Phone me anytime at
of your condition or side effects of medications. As a result, 800.716.6654 or email me at email@example.com. I will be glad
they go unidentiﬁed or may not be treated. Getting help for to listen and/or respond to provide you with information that can
your emotional needs is critical for avoiding and minimizing help. Remember, we care about you and want to help in any
complications of your medical condition and will help you comply we can!
with the medication and lifestyle modiﬁcations prescribed by
your doctor. With scleroderma, you will have good and bad days. By taking
action to combat depression, we are conﬁdent that you can
If you are experiencing any of the following symptoms, for greatly increase the good days while minimizing the bad.
two weeks or more, consult your physician or mental health
professional: (Note: If you have thoughts of suicide, seek help
immediately!) STRUGGLING WITH DEPRESSION?
Be sure to attend our Fall Education Event, which features
dedicated discussion on coping with depression. See page 8 for
• Persistent sad or anxious mood details, and we hope to have you with us.
• Loss of interest or pleasure in ordinary activities, especially
Personal Journey: Sharon Woodman
It was Christmas time, 2002 and life was busy. I am a RN and is signs of Secondary Sjogren’s Syndrome which approximately
a Certiﬁed Diabetes Educator and worked at the Diabetes 20% of all persons with scleroderma have. I also take Zanaﬂex for
Outreach Network in Grand Rapids. I loved my work and drove muscle spasms along with food supplements (Multivitamin, Fish
a total of 130 miles on days that I worked. My youngest son and Oil, and Calcium with Magnesium).
his family came from CO to spend the holidays with us.
Other treatments are yoga and exercises every day to stay
The day the kids left to go back to CO, I cleaned house—top ﬂexible. Well okay, sometimes I miss a day but my body sure
to bottom. I was tired but had lots of energy. The following knows when I do! Monthly, I receive a whole body massage
weekend, I went on a New Year’s Eve bus trip. Shopping and and then right after, I see the chiropractor to ﬁx all the spinal
being on my feet was exhausting. My feet and ankles were sublaxations. I try to stay warm to prevent Raynaud’s attacks.
edematous and I was experiencing sharp pain in my right arm. My husband bought a muff for me—I heat small rice bags that
After getting home, I had a hard time cleaning house. I was I made and place in the muff. My hands warm up in a jiffy.
experiencing stiffness with all the muscles tightening up and I also rest frequently during the day and use hot packs when
had a hard time getting out of the chair. I also had Raynaud’s resting. I no longer do things that are too physical and pace
symptoms starting the summer before. It was time to see the my activities with periods of rest. When I overdo, I experience
doctor. I thought that I had polymyositis because my mother had profound fatigue.
been diagnosed with that plus Rheumatoid Arthritis. But within a
couple of days, he called me at home and said that I probably The best thing I did for myself was joining the Scleroderma
had scleroderma because of the Raynaud’s. My response was Foundation. I receive the “Scleroderma Voice” from which I have
“Oh, no. I was hoping it wouldn’t be that one.” Within days I saw garnered so much more knowledge about my disease. It also
a rheumatologist who said I had systemic, limited scleroderma. keeps me abreast of the latest in research. I also attended the
Right away I became proactive and trusted in God to get me Michigan Chapter’s October 2007 Conference and got to hear
thought this transition in my life. Dr. Varga plus other excellent physicians talk about Scleroderma.
Today I am on seven medications to treat my symptoms: My advice to those with this chronic disease is to be proactive.
Synthroid for the hypothyroidism; Celebrex to keep the pain A chronic disease self-management workshop developed by
at bay; Procardia for the Raynaud’s attacks; Nexium for the Stanford University is available. Just call your local Commission
gastroesphogeal reﬂux or GERD; Restasis for the dry eyes plus on Aging Ofﬁce to sign up for this 6 week workshop. You will be
over-the-counter Tears; and Evoxac for dry mouth. The dryness glad you did!
Page 12 The Scleroderma Source Spring 2008
DINNER, DANCING & DIAMONDS
GALA: WE HOPE TO CELEBRATE
IT WITH YOU!
On Saturday, November 22, 2008, Chapter supporters will gather to
celebrate our cause for our annual gala at the beautiful Royal Park Hotel
in downtown Rochester, MI.
Highlights of this fabulous evening include champagne reception with
silent auction, scrumptious dinner, awards ceremony, ballroom dance
performances by Arthur Murray dancers, diamond giveaways and, brand
new this year, we are giving two couples the opportunity to show us their
dance moves in our dance contest!
And, how much fun is this: Attendees of our gala Tickets:
will judge our dancers! $150 Each
$1500 Table of Ten
Be sure to book your table or seats soon!
Seating is limited, and we just know you will want to be a part of this
fabulous fun as we come together to have a great time and raise funds to
ﬁnd the cure for scleroderma.
For more information on our gala and on making your reservation, please
phone Jennifer A. Viano, Executive Director, at 248.865.7259 or contact
her via email at firstname.lastname@example.org.
Second Annual Dinner, Dancing and
Diamonds Gala: A Fabulous Success!
The Scleroderma Foundation Michigan Chapter held its Second Annual
Dinner, Dancing and Diamonds gala on Saturday, November 3, 2007 at
the beautiful Royal Park Hotel in downtown Rochester, MI raising over
$80,000 and welcoming over 240 guests to celebrate our mission of
support, education and research.
We thank all of our volunteers, attendees, sponsors and supporters of this
event whose participation and support made this gala such a wonderful
To read more about our Second Annual Gala and to view amazing photos
from the event, please visit www.scleroderma.org/chapter/michigan.
Spring 2008 The Scleroderma Source Page 13
Beneﬁt From Outstanding Programs Offered Through The Arthritis Foundation
The Scleroderma Foundation ﬂexibility and building muscle strength.
Michigan Chapter is pleased
to partner with the Arthritis Arthritis Foundation Exercise Program
Foundation Michigan Chapter The low impact exercises taught in this class, developed by
to promote their Arthritis physical therapists, can be done either sitting or standing, to
Foundation Life Improvement Series. We hope that you will relieve stiffness and decrease arthritis pain.
take full advantage of their outstanding programs offered in this Tai Chi from the Arthritis Foundation Program
series. This joint-friendly program, developed by a physician and tai chi
As a rheumatic condition, scleroderma can be treated through master, uses the gentle, graceful, ﬂowing power of Sun-style tai
many of the same treatment modalities suggested for arthritis. chi to promote mental and physical strength and ﬂexibility.
Because of this, our Chapter encourages people affected by Arthritis Foundation Self-Help Program
scleroderma symptoms to consider involvement in programs This in-depth program gives people with arthritis or related
offered in the Arthritis Foundation Life Improvement Series, which condition the knowledge and skills they need to better manage
can beneﬁt your overall health and well-being. arthritis. Classes cover ways to reduce pain and
Classes offered by the Arthritis Foundation have been stress, cope with fatigue, use medications wisely
documented to have signiﬁcant positive outcomes and the beneﬁts of exercise.
for those who attend. While every individual is When and where are classes offered?
unique, many people who take this series enjoy the Classes are offered at various times and in many
following beneﬁts: convenient locations. Contact the Arthritis
• Decreased pain Foundation ofﬁce—800-968-3030—for a detailed
• Decreased doctor and emergency room visits listing of classes and registration information. Or visit the Arthritis
• Increased ﬂexibility and range of motion Foundation website at www.arthritis.org and type in your zip
• Increased energy code to view a listing of classes in your area.
• Better, more relaxed sleep What is the cost?
• Improved outlook Fees for Life Improvement Series programs are set by each
• Improved overall health status facility. Please contact the facility directly to inquire about class
The programs in the Life Improvement Series can be taken fees.
individually or together, in six-week sessions or year round. They Questions for Us?
include: Please contact Carol Hilf, Patient Services Coordinator, at
Arthritis Foundation Aquatic Program 800.716.6554, 248.865.7259 or via email at chilf@scleroderma.
This program combines the buoyancy of water and the soothing org.
warmth of a heated pool to make a safe, ideal exercise NOTE: We strongly encourage you to consult with your physician(s)
environment for relieving pain and stiffness, increasing joint prior to beginning any health-care or exercise regimen.
Camp Sunshine: Supporting Children With
Life-Threatening Illnesses And Their Families
Nestled alongside the shores young people with skin conditions who are between the ages of
of beautiful Sebago Lake 8 and 16. Under the expert care of dermatologists and nurses,
in Maine, Camp Sunshine Camp Discovery gives campers the opportunity to spend a
provides respite, support, joy, week with other young people with similar skin conditions, while
and hope to children with life- participating in activities such as swimming, boating, ﬁshing, arts
threatening illnesses and their and crafts and lots of camp games and activities. Many of the
immediate families through counselors also have skin conditions and can provide support
various stages of a child’s illness. The year-round program is free and advice to the campers.
of charge to all families, and includes 24-hour onsite medical
and psychosocial support. Bereavement groups are also offered There is no fee to attend this very special camp. Full scholarships,
for families who have lost a child to an illness. Please visit www. including transportation, are provided by the Academy through
campsunshine.org for more details. generous donations from its members, outside organizations and
More camps available to kids include:
Camp Wonder: Camp Wonder is an incredible camping July 6 - 11, Teen Camp in Crosslake, Minnesota (ages 15 - 16)
experience being offered to children with skin disease, ages 6-16, July 12 - 18, Junior Camp in Crosslake, Minnesota (ages 10 -14)
at no cost to the family or child. The week offers the opportunity August 9 - 16, Camp Horizon, Millville, Pennsylvania (ages 8 -13)
to participate in exciting activities, form lasting friendships, and August 10 - 15, Camp Dermadillo, Burton, Texas (ages 9 - 16)
ultimately develop a stronger sense of self-esteem, while under
the careful and loving supervision of an excellent medical staff The deadline for applications is April 14, 2008. For information
and counselors. Visit www.csdf.org/camp for more details. about volunteering at one of the camps or referring a child to
Camp Discovery, visit their Web site at www.campdiscovery.org
Camp Discovery: The American Academy of Dermatology or contact Janine Mueller at email@example.com.
(Academy) is proud to offer four camping sessions this year for
Page 14 The Scleroderma Source Spring 2008
Welcome New Board Members! Importance of Disability Insurance
Our Chapter is most excited to welcome the following new board Many people have determined the amount and type of life
members who began their two-year term with us in January 2008: insurance they need, but surprisingly few people have analyzed
their disability insurance needs.
Mr. Lee Maniago
Lee Maniago has spent 30 years with the Kmart Corporation The cost of a debilitating illness or injury easily could deplete
managing stores, districts, regions and master regions. cash reserves and assets set aside for other purposes such as
He was Vice President of Sales and Marketing, Regional retirement or funding a child’s education. Even individuals
Vice President and a Corporate Ofﬁcer. After leaving Kmart, covered by their employers’ disability policies may not have
he was Vice President of Operations for English Gardens in enough insurance and should consider a supplemental policy.
Detroit, MI for 5 years.
To be sure coverage is adequate, current monthly income and
Currently he is Vice President of Oakland Living Corporation in Rochester, expenses should be compared with the income and expenses
MI, a manufacturing company of patio furniture and home and garden that would continue through a period of disability, allowing
accessories. The company owns and operates two factories in China and for inﬂation. Beneﬁts from individually paid disability premiums
has a 72,000 sq. ft. distribution center in Rochester. The company serves are not taxable; beneﬁts from employer-paid premiums are
customers throughout the continental United States and also in Europe taxable.
Some disability policies consider beneﬁciaries disabled and
Lee has won the ‘Best Point of Purchase of the Year Award’ for Lion King eligible for beneﬁts only if they are physically or mentally impaired
and Jurassic Park and the ‘Gift of Life Award’ from Give Kids the World in to the point where they can no longer perform any job.
Orlando, FL. He is a graduate of Lawrence Institute of Technology and
Disney University Some disability policies are moving from the formerly standard
“own-occupation” coverage to “loss-of-earnings” coverage.
Ms. Teckla Rhoads
An own-occupation policy pays if the beneﬁciary is unable to
Teckla Rhoads is the Director of Industrial Design and North
perform his or her former occupation. Under such a policy, a
American Design Operations at the GM Design Center in
beneﬁciary potentially could receive full beneﬁts while working
Warren, Michigan. In this position, she is responsible for the
in a different occupation full or part time.
Business and Operations support of the North America Design
Centers including Warren, Michigan, California Advanced A loss-of-earnings policy costs less to buy than an own-
Design Studio and the United Kingdom Advanced Design occupation policy and offers beneﬁciaries the opportunity to
Studio. She is also responsible for the Industrial Design return to their own occupations, or any other, and still be eligible
studios which include Exhibit Design, Corporate and Brand Identiﬁcation, for beneﬁts. In a loss-of-earnings policy, beneﬁts are based on
Photography & Video, and Architectural Design. loss of earned income. Beneﬁciaries only receive beneﬁts if they
Teckla earned her bachelor of ﬁne arts degree in Industrial Design from earn less income than they did before they became disabled.
the Center for Creative Studies, Detroit in 1981. She began her career as Questions? Please contact Carol Hilf, Patient Services
a package designer for Wilson Design, Royal Oak, Michigan, in 1981. She Coordinator, for more information.
joined the GM Design team in 1983 as a lettering specialist.
Teckla contributes her free time to many local, non-proﬁt organizations
in the Detroit area and nationally. She currently serves as the national
Thank You To Leadership
Chairperson of the Board of Representatives for the Leukemia and
Lymphoma Society. In addition, Teckla is a member of the Historic Trinity,
Inc. Board of Directors in Detroit.
Thank you to the following members who have given at
Teckla and her husband, Michael, reside in Shelby Township. leadership levels to begin or renew their membership
Ms. Kim Stine in our 2008 campaign:
Kim Stine is the Vice President of Marketing and Operations
at Michigan Financial Companies, a ﬁnancial services Distinguished Members
ﬁrm specializing in fringe beneﬁts, estate and business $1000+ Membership Contribution
continuation planning for both publicly and privately-held Annie and Conrad Valle
Ms. Stine specializes in marketing and branding Michigan
$500-$999 Membership Contribution
Financial Companies. She designs and produces all aspects
of advertising and promotion. Linda and Mark Kaminski
Ms. Stine has extensive experience speaking to associations, professionals Supporting Members
and business owners in growing and marketing their business. $100-$499 Membership Contribution
Ms. Kerrie Trompics Suzanne Barczak
Kerrie is an accomplished community leader who has a Sarah Harper
strong passion for our cause. She ﬁrst became involved with Brooke and Reid Heitkamp
the Scleroderma Foundation MI Chapter by attending an Carol and Gary Huff
event to support Barry Sanders, a celebrity ambassador for Sondra and Ken Kaminski
our Chapter, Lauren (Barry’s wife) and their family.
Marie and Joseph MacRae
Kerrie is a graduate of Michigan State University where she Lisa and Brian Simpson
earned a Masters in Advertising. Her many accomplishments
include coordination of sponsorships for the Olympic games in Atlanta Please note that these members provided their
and Sydney on behalf of Saturn Corporation, ten years of experience as leadership contribution prior to the copy deadline
spokesperson for auto shows, work as a bio-tech sales representative for of this newsletter; if you have provided a leadership
a diagnostic contrast agent for cardiac testing, facilitator for Stephen
Covey’s Seven Habits for Highly Effective People and previous ﬁtness
membership contribution of $100 or more and do not
consultant for Fox 2 News in Detroit. see your name listed, your name will be recognized in
our Fall 2008 newsletter. And, thank you very much for
Kerrie is excited to be lending her leadership and talent to our Chapter to
your membership contribution!
help and support the people who are affected by the disease.
Spring 2008 The Scleroderma Source Page 15
30301 Northwestern Highway
Farmington Hills, MI 48334
29th Annual Walk and Run!
Help us ﬁnd a cure for scleroderma by joining us with all of your friends and
family at our Chapter’s biggest fundraiser, which will be held at a venue that is
truly a fabulous destination for all of us to enjoy - the World-Class Detroit Zoo!
SUNDAY, JUNE 8, 2008
WORLD-CLASS DETROIT ZOO, ROYAL OAK, MI
See page 11 for all of the details!