Scleroderma Education Project
Scleroderma Education Project
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About this organization
Mission
Patient Education Our primary mission is to provide comprehensive, up-to-date, research-based information on systemic scleroderma diagnosis and treatments written in a manner that patients can readily understand. We believe that patients who are thoroughly educated about their disease can work more effectively with their team of physicians to make the best possible individual care decisions. Clinician Resources Most patients who end up diagnosed with systemic sclerosis are initially seen by clinicians who do not specialize in this rare disease and may not be up-to-date on scleroderma diagnosis and treatments. The Scleroderma FAQ can be a helpful starting point for clinicians who are not scleroderma specialists in understanding current research-based approaches to scleroderma diagnosis and treatments. Additional resources such as the ANA and antibody testing series also provide practical information that can be helpful in systemic sclerosis diagnosis. Research Current systemic scleroderma (SSc) treatment research focuses on two stages of the disease process: (1) immune system regulation / suppression, and 2) drugs that slow or stop fibrosis. To date, neither of these treatment approaches has been shown to be effective in fundamentally slowing SSc disease progression. While SSc is a complex disease that is not fully understood, research indicates that SSc is a disease of the microvascular system where repeated damage to the lining of the smallest blood vessels leads to the fibrotic processes that trigger the entire symptom cascade. There is a significant body of research that documents abnormal blood rheology (increased overall blood viscosity and abnormal clumping of red blood cells) in people with SSc. Our research focus is on better understanding the role of this abnormal blood rheology in systemic sclerosis pathogenesis and determining if treatments that target this early stage of the disease process may be more effective and safer than current treatment approaches that focus on immunosuppression.
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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