Scleroderma, also known as Systemic Sclerosis, is a rare chronic autoimmune disease of the connective tissue. The manner in which scleroderma presents itself varies widely, as does the course the disease may take. Symptoms may be visible, as when the skin is affected, or invisible - when only internal organs are involved, or a combination of both. Characterized by abnormal fibrotic processes which result from increased production and deposits of collagen in the skin, the name Scleroderma derives from the Greek words skleros (hard) and derma (skin). First reported in the mid-1700's, it remains difficult to diagnose. There is no known cure. Thanks to recent strides in research, more options now exist in many areas of symptom management.
- Scleroderma is not contagious.
- Though not inherited, there may be a familial predisposition.
- While seemingly rare, scleroderma is thought to be more prevalent than muscular dystrophy, multiple sclerosis or several other better-known diseases.
- Scleroderma, or 'systemic sclerosis,' is thought to affect approximately 16,000-20,000 Canadians (studies vary).
- It is four to five times more prevalent in women than in men.
- The cause/s is unknown though some chemical and environmental links have been acknowledged.
Symptoms of Scleroderma May Include One or More of the Following:
- Raynaud's Phenomenon (abnormal sensitivity to cold)
- Swelling of the hands and/or feet
- Pain and stiffness in the joints
- Thickening of the skin, joint contractures
- Digestive system and gastro-intestinal tract problems
- Oral, facial, and dental problems
- Kidney, heart, and lung dysfunction
Nonspecific Symptoms: extreme fatigue, generalized weakness, weight loss and vague aching of muscles, joints and bones More About Scleroderma:
In 2013, the Scleroderma Society of Canada launched a comprehensive new national website. Whether you are newly-diagnosed or having been living with scleroderma for some time, the site offers helpful current Canadian, medically-reviewed information on localized scleroderma (linear, morphea) and Systemic Scleroderma (limited, limited with CREST, diffuse, and sine). We highly recommend a visit to the SSC site for further information: http://www.scleroderma.ca/Education/Overview.php
A Message of Hope: Research into finding a cure for scleroderma is of tremendous importance. The SABC is proud to have played a role in the formation of the Scleroderma Society of Canada (SSC) in 1999. Thanks to the concerted efforts of a group of seventeen rheumatologists from across Canada, the Canadian Scleroderma Research Group (CSRG) was founded in 2004. In 2009, the SSC and CSRG were the recipients of a Partnership Award from the Canadian Institutes of Health Research (CIHR), in recognition of the results of their joint efforts on behalf of Canadians with scleroderma. In 2012, the CSRG joined with a number of international scleroderma research cohorts to form the ground-breaking initiative "INSYNC" the INternational SYstemic sclerosis iNception Cohort. http://canadian-scleroderma-research-group.ca/insync.html
Scleroderma research is now being undertaken at hospitals and institutions across Canada, and in countries around the world. In 2014, the World Scleroderma Foundation will host the 3rd Systemic Sclerosis World Congress; the inspirational 2012 Congress attracted 1,100 doctors and researchers working to improve the quality of life of those living with scleroderma, and toward the ultimate goal of finding a CURE.