Literally, the term scleroderma means ?hard skin?. It is a progressive disease of the vascular and immune systems and a severe connective tissue disorder. In scleroderma, some unknown factor triggers the over-production of collagen (body protein) causing thickening, hardening and scarring of the skin and other organs, most commonly the gastrointestinal tract, lungs, kidneys and heart. This often affects the small blood vessels that carry blood to many parts of the body.
Scleroderma also known as systemic sclerosis (SSc), is a devastating disease that affects up to 16,000 Canadians. Although all age groups may be affected, the onset of SSc is highest between the ages of 30 and 50 years and it is four to five times more prevalent in women than in men. Because it is relatively uncommon, there is clearly a need to join forces to beat this disease. Thus,the Canadian Scleroderma Research Group(CSRG), a dedicated group of Canadian rheumatologists, was created. They are determined to better understand Scleroderma, as well as better gauge its full medical and psychological impact on the life of people affected in order to help treat them.
The following are links to well-recognized patient groups, Sclérodermie Québec and the Scleroderma Society of Canada, and to the Scleroderma Foundation, a national non-profit health organization.
Sclérodermie Québec: www.sclerodermie.ca
Scleroderma Society of Canada: www.scleroderma.ca
Scleroderma Society of Ontario : www.sclerodermaontario.ca
Scleroderma Foundation : www.scleroderma.org
Orphanet
(Database dedicated to information on rare diseases and orphan drugs):
http://www.orpha.net/
Canadian Organization for Rare Disorders (CORD):