What is Scleroderma?

The word “scleroderma” is Greek for hard skin, the most visible characteristic of the disease. In fact, scleroderma is much more than this; chronic, complex and debilitating, it often affects the internal organs with life-threatening consequences. Depending on the subtype of illness, scleroderma can damage the lungs, kidneys and gastrointestinal tract with grave results. Peripheral vasculature damage due to scleroderma can result in loss of digits or limbs. In some cases, the joints and muscles are affected, resulting in a loss of mobility.

Scleroderma falls into several different disease categories: It is a vascular disease because it can constrict and injure tiny blood vessels. It is a connective tissue disease because it can cause abnormal changes to the skin, tendons and bones. Like many other rheumatic disorders, scleroderma is believed to be an autoimmune disease because the disease can apparently trigger the body to make antibodies against itself.

The symptoms and severity of scleroderma vary from one person to another and the course of the disease is often unpredictable. The number of women affected with scleroderma is disproportionately high with some estimates suggesting as many as four out of every five patients being female. The disease most often strikes between the ages of 20 and 50; however, children and those above age 50 across all ethnic groups are also affected.

Today, there is no way to prevent scleroderma and there is no cure. Treatments are available for some, but not all of the most serious complications of the disease. Current treatments include medications that modulate the immune system, chemotherapy drugs, vasodilators and ACE-inhibitors. Presently, most treatments act to slow the progression of the disease and limit damage rather than truly arresting the disease. In addition, some of the drugs currently in use can have serious side effects. There is much work that remains to be done.

Despite the number of people affected by scleroderma and the devastating effect the disease can have, scleroderma research remains critically underfunded by the National Institutes of Health. Contributions made to the Scleroderma Research Foundation support promising exploratory projects as well as innovative research studies that may provide the basis for longer term investment by federal research funding programs. Until new therapies are made possible by advances in medical research, people living with scleroderma continue to have hope, knowing that scientists are working every day on their behalf.

For a more detailed description of scleroderma, click here.

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