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What is Scleroderma?

(far left) Lauren's Scleroderma resulted in the right side of her face growing normally, but not the left.  (Center) Constrictions in tendons (contractures) caused by over production of collagen have left Jill's fingers curled and swollen.    (Right) Fran's Scleroderma left her near death in 1982.  Stable now, despite loss of a finger, Fran has helped others by serving as a Chapter President in the Scleroderma Foundation, and starting a support group in New York.   Links to Scleroderma sites are listed below.

Scleroderma is an autoimmune disease of the connective tissue.  Although it primarily afflicts women  in their child bearing years, the ranks of Scleroderma patients do include both males and children.  The two major forms of the disease include limited (CREST) and systemic.  The latter has also been referred to as Systemic Sclerosis.  

Scleroderma is an over-production of collagen, and for this reason, one of the symptoms of Scleroderma is hard skin.  Scleroderma taken literally means "hard skin", and this title has probably hurt efforts to publicize this disease.  A disease that causes skin to harden doesn't sound nearly as ominous as AIDS, Cancer, Multiple Sclerosis etc.  Unfortunately, Scleroderma causes much more than cosmetic problems.  In addition to the hardening of the skin, Scleroderma can affect internal organs including the lungs and kidneys, and  can cause these organs to fail with potentially fatal consequences. 

 Ulcerations and calcifications particularly on the fingertips can lead to loss of hand function which can be devastating and debilitating in many professions.  They can lead to gangrene, which may require surgical intervention, including amputation.  

There is little consensus on how many cases of Scleroderma exist world-wide.  Estimates range from 100,000 to over a million.  Scleroderma is often misdiagnosed because its symptoms may also be symptomatic of other diseases.  

There is no known cure for Scleroderma today.  Although physicians can and do treat symptoms, the key to finding a cure for Scleroderma comes through research.   Research requires funding, funding requires publicity and education.  The task of raising money for Scleroderma research is hampered by the fact that so few people have heard of it.  

Above are the faces of some of my friends who are Scleroderma patients.  Won't you please help them by raising public awareness of Scleroderma. 

Please tell someone about Scleroderma today. 

The Scleroderma Video Series: 

As of June, 2003, this section is being revised to include recent and upcoming titles.

Please check back in late July for details.

Please feel free to email us with your questions:  starl@optonline.net.net

To learn more about Scleroderma please check the following sites:

Scleroderma Links:

1. Scleroderma From A to Z:                                                                   www.sclero.org  
2. Mick's World of Scleroderma Links                                                       www.enetis.net/~rbreske/scleroderma.htm
3. Scleroderma Foundation - Delaware Valley Chapter (DE, NJ, PA)            www.sclerodermadv.org
4. Scleroderma Foundation - Michigan Chapter                                         www.miscleroderma.org
5. Scleroderma Foundation - South Carolina                                             www.sclerodermasc.org

We will be adding more Scleroderma based links in the near future.  Please email us with specific link requests:  starl@warwick.net