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News Releases
Get In the Know:
Scleroderma Awareness
Columbia, Mo. (June 13, 2007) - June is Scleroderma Awareness Month across the United States. Scleroderma is a disease that is often misunderstood. Scleroderma means "hard skin", but scleroderma (or progressive systemic sclerosis, as it is sometimes called) is much more than just a skin disease. It can affect many parts of the body. Therefore, improved public understanding is vital for those who have the disease. So what is scleroderma?
Scleroderma is a rare disorder characterized by abnormal thickening or tightening of the skin, blood vessels and internal organs. The Scleroderma Foundation estimates 300,000 Americans have the chronic illness. People of any age can develop the disease, but it is most prevalent in those between the ages of 25 to 55. Scleroderma also affects more women than men, with four times as many women developing the disease.
The first signs of scleroderma are usually patches of skin on the hands or face that begin getting thicker and harder. These patches then spread to other areas of the skin. "Scleroderma affects everyone differently," says Margaret Lindsey, RN, director of the Southwest Regional Arthritis Center at the St. John's Regional Health Center in Springfield, Missouri. "It is so important to seek medical attention early."
According to the Arthritis Foundation, people with scleroderma may develop either a localized or a systemic form of the disease. Localized scleroderma usually affects only the skin on the hands and face, and progresses very slowly. Systemic, widespread scleroderma affects large areas of the skin and may affect the organs of the body.
Because there are various forms of scleroderma associated with different kinds of symptoms, people need better communication with their physicians. "Treatment is often based on the symptoms the person discloses," says Lindsey.
Scleroderma is not contagious, but for those who have it, it can greatly affect self-esteem and the ability to accomplish everyday tasks. "Because there is not any cure for scleroderma, the more people know about the disease, the quicker they will seek medical advice and, in turn, live a better quality life," says Lindsey. "It is also extremely important to have family support."
For more information, contact Margaret Lindsey and the Southwest Regional Arthritis Center at http://marrtc.org/community/rac/swrac/about.html or The Scleroderma Foundation at www.scleroderma.org.
The Missouri Arthritis Research Rehabilitation and Training Center (MARRTC) was established in 1971 at the University of Missouri-Columbia Arthritis Center. MARRTC is funded by the U.S. Department of Education's National Institute on Disability and Rehabilitation Research (H133B031120) and is the only federally funded arthritis rehabilitation research and training center in the country.
As part of the MU Health Communication Research Center (HCRC), MARRTC's mission is to become a national leader in the areas of disability management and communication, improve the quality of life and promote independent living among people who have arthritis and arthritic conditions. MARRTC's core message is "Disability is everyone's issue."
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