Getting the Word Out About Scleroderma

Gov. Bob Wise has proclaimed today Scleroderma Awareness Day in West Virginia.

Tracy Williams, a former Parkersburg resident, is one of 300,000 people diagnosed with the disease. Williams, who now lives in Boston, had numerous conflicting diagnoses from doctors of her skin ailment, before finally finding a doctor who determined she had scleroderma a few years ago and she's seeking public support to help find a cure.

"In Boston, where I'm living, the highest concentration of people living in one small area have it there," Williams says. "So there's concerns that, while some of it is hereditary, some of it might also be linked to the environment."

Williams hopes an office of the national scleroderma foundation can be opened in West Virginia.

"The community support has been phenomenal, both statewide, and when I was first diagnosed," she says. "And we'd like to increase that awareness by starting this foundation."

Thanks in part to Tracy's appearance Friday morning on Daybreak, the awareness booth she's manning at Grand Central Mall had several visitors after it opened Friday morning.

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What is Scleroderma?

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases.

The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. The disease has been called “progressive systemic sclerosis,” but the use of that term has been discouraged since it has been found that scleroderma is not necessarily progressive. The disease may take several forms which will be explained later. There is also much variability among patients.
Scleroderma is a disease whose symptoms may be visible, as is the case when the skin is affected, or the symptoms may be invisible, as when internal organs are affected.

What scleroderma is not

Scleroderma is not contagious, it is not infectious, it is not cancerous or malignant.

How serious is scleroderma?

Any chronic disease can be serious. The symptoms of scleroderma vary greatly from individual to individual, and the effects of scleroderma can range from very mild to life-threatening. The seriousness will depend on what parts of the body are affected and the extent to which they are affected. A mild case can become more serious if not properly treated. Prompt and proper diagnosis and treatment by qualified physicians may minimize the symptoms of scleroderma and lessen the chance for irreversible damage.

Who develops scleroderma, and when?

It is estimated that there are approximately 300,000 persons with scleroderma in the United States, including 80,000 to 100,000 with the systemic form and the rest with the localized form. International incidence is unknown, but it has been reported worldwide. Statistically, approximately three to four times more women than men develop the disease. Scleroderma can develop and is found in every age group from infants to the elderly, but its onset is most frequent between the ages of 25 to 55.

Factors other than sex, such as race and ethnic background, may influence the risk of getting scleroderma, the age of onset, and the pattern or severity of internal organ involvement. The reasons for this are not clear. Although scleroderma is not directly inherited, some scientists feel there is a slight predisposition to it in families with a history of rheumatic diseases.

What causes scleroderma?

The exact cause or causes of scleroderma are still unknown, but scientists and medical investigators in a wide variety of fields are working hard to make those determinations.

Source: Scleroderma Foundation (www.scleroderma.org).


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