Project PASS
About Scleroderma
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Project PASS |
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About Scleroderma |
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Systemic sclerosis (SSc; scleroderma) is a connective tissue disease characterized by skin thickening and internal organ involvement. There is great heterogeneity in the clinical presentation, progression, and severity of SSc. Some patients experience thickening and tightening of the extremities and minimal internal organ involvement (limited systemic sclerosis). Others experience widespread and central skin thickening and multiple organ involvement, affecting renal, cardiovascular, gastrointestinal, and/or pulmonary functioning (diffuse systemic sclerosis). Negative prognostic indicators associated with diffuse systemic sclerosis and include involvement of truncal skin as well as the kidney, heart, and lungs. Cumulative survival rates are approximately 60-70% at 5 years post-diagnosis and 40-50% at 10 years post-diagnosis. At present, treatment remains palliative and focused on symptom relief; there is no cure for the disease.
The prevalence of SSc in the United States is estimated to be approximately 300,000, with incidence rates estimated at 2-20 per million per year. Incidence is believed to have increased over the past 3 decades. Estimates of the most common age at onset range from 25-50 to 45-64, with women approximately 4 times more likely than men to be affected. However, despite the number of people affected, the unknown cause, significant disability, uncertain course, lack of cure, and negative prognosis associated with SSc, this disease has received very little attention from mental health researchers, far less than that given to other rheumatic diseases such as rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). While research on other rheumatic diseases is likely to be pertinent to understanding psychological adjustment to scleroderma, specific research on individuals with SSc is needed to determine whether results of studies on other chronic diseases also apply to this population, or whether there are aspects of the adjustment process that are unique to SSc.
Links to additional scleroderma sites:
Disclaimer: This site has been designed to provide information to students, patients, healthcare professionals, support networks, and other interested audiences. Great efforts have been made to provide accurate and current information, but it is not comprehensive in scope. These pages are not intended to provide individual psychological advice. For such advice, patients should see a professional.
This site also contains links to other Internet sites. Neither SDSU nor Dr. Malcarne have any knowledge of the information contained in such other sites. Therefore, SDSU and Dr. Malcarne take no responsibility whatsoever for third party information accessed through this site.
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