Scleroderma is another rare disease that takes years to diagnose

, we spoke with SABC president Roseanne Queen, who has surpassed her own prognosis of five years to 26.It is threefold: We support scleroderma patients by promoting outreach and education, including monthly “Come Zoom with Us” support meetings where people share stories, but more importantly, we provide tips for how to deal with scleroderma. We also hold educational seminars where professionals come and talk to us about the aspects of scleroderma, and tell us how to manage the disease.

The last thing we do is support research. Since we started — it will be 40 years next year — we’ve raised over $1 million [for research]. That’s pretty good for a very small, volunteer organization.; we’re more aligned with the Manitoba and Quebec [associations]. One of the things Scleroderma Canada does for us, though, is when they receive a grant to work on getting a drug approved through pharma they will include all the provinces.

Roseanne Queen, president of the Scleroderma Association of B.C., was told she would only survive five years. SUPPLIED In addition to the daily challenges of living with pain, fatigue, depression, mobility issues, there’s the fear of not knowing how the disease will progress. I was told I would be dead in five years. I’m lucky, I’m 26 years [past that] and I’m pretty healthy. Lots of others have lived 30 and 40 years [longer].We shouldn’t have to have a referral to see a specialist. It sometimes takes a GP years to figure out what’s wrong with us.

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