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Thank you for visiting
our website. We are pleased to offer you the following
helpful information on scleroderma and help available
at our Chapter:
INFORMATION
The Scleroderma Foundation Michigan Chapter is one
of 21 chapters of the National Scleroderma Foundation,
a 501(c)3 non-profit organization located outside of
Boston, Mass.
 The
Foundation's mission is three-fold:
Support: To help patients and their families
cope with scleroderma through mutual support programs,
peer counseling, physician referrals, and educational
information.
Education: To promote public awareness and education
through patient and health professional seminars, literature,
and publicity campaigns.
Research: To stimulate and support research
to improve treatment and ultimately find the cause of
and cure for scleroderma and related diseases.
Scleroderma is a chronic, autoimmune connective tissue
disease, and the word scleroderma literally means hard
skin.
Common symptoms include hardening and thickening of
the skin, one of the most visible manifestations of
the disease. Other symptoms include Raynaud’s
disease (abnormal sensitivity to cold in the extremities),
swelling of the hands and feet, pain and stiffness of
the joints, joint contractures, digestive system and
gastrointestinal tract problems, oral, facial and dental
problems, and kidney, heart and lung involvement.
Characteristics of the disease include an over-production
of collagen and damage to blood vessels.
Approximately 300,000 people in the United States suffer
from scleroderma. Scleroderma primarily affects women
between the ages of 25 and 55. There is currently no
known cause or cure.
The Scleroderma Foundation funds over $1,000,000 in
research annually to help find the cure.
HELP AVAILABLE AT OUR CHAPTER
 Our
Chapter is pleased to offer a variety of programs and
services to help people affected by scleroderma including:
- Patient Education Days
These educational patient-focused forums provid throughout
the year help patients and their family/friends learn
more about topics related to scleroderma care and
treatment. Click
here for information on our Patient Education Days.
- Hope, Health and Healing Conference
This educational and inspiration all-day event welcomes top medical experts in the field of scleroderma treatment and research to speak on cutting-edge topics related to scleroderma. Please note that our next Conference will be held in Fall 2009. Click here for information on our 2007 Conference.
- Membership
For just $25, you can become a member of our Foundation, which provides with a complimentary subscription to the Scleroderma Voice, a quarterly magazine published by our national office. It is an outstanding publication offering readers the latest in scleroderma news, information, care and treatment.
Membership provides you with additional benefits associated with our Chapter, as well. For more information on all membership and all levels of membership we offer, please click here to view our Membership Benefits flyer and Membership Registration Form.
- Educational Newsletters
Twice per year we send a 16-page newsletter full of
information on scleroderma care and treatment as well
as patient stories, news on our Chapter and our events
and more. Click
here for our latest newsletter.
-
 Support
Groups for Patients
We offer eight support groups across Michigan where
patients can meet with others who have scleroderma
to discuss their unique challenges and coping techniques.
Click here
for information on our support groups for patients.
- Support Groups for Caregivers
We offer a support group dedicated to caregivers only.
This group meets quarterly and discusses the unique
challenges of being a caregiver to someone with scleroderma.
If you would like to learn more about this group,
please contact Carol Hilf, Patient Services Coordinator,
at 248-865-7259 or via e-mail at chilf@scleroderma.org.
- Toll Free Telephone Help Line
Contact us anytime toll free at 800-716-6554 for information,
counsel, physician referrals and anything we can do
to help you.
- Literature and Video Library
Our Chapter has a wide variety of literature on scleroderma
and its many symptoms. In addition, we have a video
library with videos available on topics such as yoga,
past conferences and more. Contact us at 248-865-7259
to learn more.
- One-On-One Counseling
Carol Hilf, Patient Services Coordinator, is available
for one-on-one counseling to discuss your individual
experience with scleroderma. Contact her to schedule
your appointment via phone at 248-865-7259 or via
e-mail at chilf@scleroderma.org.
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