Scleroderma Association of British Columbia 2.46

In 1982, three people diagnosed with a rare disease, progressive systemic sclerosis (scleroderma) came together with the help of the same doctor. There were no brochures. Library information was in medical jargon – and dire. In 1984 the trio had grown to five who decided to launch a program through doctors to find more patients and form a provincial support system.

Today we number over 350 members (likely as many more we don’t know of) who receive our quarterly newsletter, and are served by a Community Contact liaison in communities throughout BC. Though scleroderma is known to be more prevalent than either multiple sclerosis or muscular dystrophy, few people are aware of this insidious disease. We have said ‘good-bye’ too soon to an average of 12 patient members each year over the last several years. We are not a large organization.

The SABC proudly contributed to the formation and equipping of the BC Scleroderma Clinic and Research Centre (at St. Paul’s Hospital in Vancouver). The SABC also supports the work of the Pacific Lung Health Centre. Under the auspices of a rheumatogist and a respirologist, a dedicated “combined clinic” is now available to those whose scleroderma is affecting their lungs. People come from all parts of BC to be diagnosed or have diagnosis confirmed, to ensure their treatment is optimum, and to take part in research. In 2012, thanks in part to the Gurmej K. Dhanda scholarship and research awards, the SABC received acknowledgement for its role in supporting three BC-based research studies undertaken through the Clinic, and accepted for publication in respected medical journals. In 2013, thanks to our dedicated supporters, the SABC donated $50,000 to the St. Paul’s Hospital Foundation scleroderma research fund, intended to support a “proof of concept” study of scleroderma biomarkers using skin fibroblasts and circulating white cells. It is hoped that RNA gene expression sequencing may lead to the identification of gene abnormalities in the scleroderma population, which may in turn lead to earlier diagnosis and treatment options.

Together with the scleroderma support group of Calgary, the SABC played a founding role in the formation of a national scleroderma organization in 1999. The Scleroderma Society of Canada (SSC) has resulted in strength in numbers, greater access to research funding, and a louder voice for awareness. The Society works closely with the Canadian Scleroderma Research Group (CSRG), which was founded in Montreal in 2004. The CSRG has created a national patient database, and as of 2012 have published more than 60 scientific articles, gaining an international reputation as a respected leader in scleroderma research.

Each province is independent while doing what it can to support national initiatives. Our support of the BC Scleroderma Clinic Research Centre and Combined Clinic along with the SSC and the CSRG is a challenge that very few patients are physically able to participate in though their support does not waver in our effort to promote improved diagnosis, treatment, research and awareness of a foe a great majority of the public remains oblivious to. Improved awareness is essential progress.

This material lends credence to what the actions of a very small core have been able to accomplish – virtually operating on a shoe string – and how proud we are of a growing family united in dedication to the ‘scleroderma’ cause.