About

Scleroderma (literally “hard skin”) is an umbrella term for a family of rare diseases with the common factor being abnormal thickening (fibrosis) of the skin.  There are two types of scleroderma: localized and systemic.  The localized forms of scleroderma, often beginning in childhood, are usually limited to different kinds of skin changes and do not have internal organ involvement.  In contrast, the systemic forms of scleroderma, usually classified as “limited” or “diffuse”, are complex autoimmune diseases that affect organs throughout the body in addition to skin changes.  It is estimated that the systemic forms of scleroderma affect between 60,000 and 100,000 people in the US.   The initial symptoms typically present during middle age.  Women are much more frequently affected than men.

The focus of the Scleroderma Education Project is solely on the systemic forms of scleroderma.  Our primary mission is education, from basic information for patients and family members to advanced information that can be useful to clinicians who are not scleroderma specialists.  In addition, the Scleroderma Education Project is also advancing research that is focused on better understanding the early stages of the systemic scleroderma disease process with the hope that this might lead to new treatment approaches that have the potential to be safer and more effective than current, largely ineffective, treatment approaches that mostly focus on suppressing the immune system.

We do not endorse any specific treatments, drugs, or research trials discussed on this website. Because scleroderma affects all patients differently, treatment approaches that may be appropriate for some patients may be less suitable for other patients. Any treatment decisions should be based on knowledgeable discussions between patients and their clinician(s).

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