A Hard Disease with a Harder Name

HAMILTON, Ont. — The word itself is like a tongue twister. It is hard to say.

But scleroderma is an even harder disease, a rare disorder that sees its patients fighting not only the devastating effects of their skin hardening, but also a stigma that comes with a general lack of awareness of scleroderma and its symptoms. It affects thousands of people, but millions don’t know anything about it.

“With no known cause or cure, scleroderma is a disease that doesn’t discriminate,” says Maureen Sauvé, a scleroderma patient and past president of the Scleroderma Society of Canada. “It can strike at men and women, young and old, any ethnicity. But we shouldn’t have to suffer alone. We are not our disease.”

Scleroderma is an autoimmune disease that causes the body to produce too much collagen, which in turn causes patches of skin to harden. Symptoms are both visible and invisible, attacking any organ in the body, and they make every day life extremely difficult.

As a rare disease, research into better therapies — and, ultimately, a cure — is vital. But resources are thin. Over the course of the month of June, Scleroderma Awareness Month, several communities across Canada are hosting fundraising and awareness events to raise money for research and educate about scleroderma and its devastating effects.

“The science is getting better and our understanding of scleroderma is improving,” says Maureen. “But we still have a long way to go. We are better treating the symptoms, and our capacity to support people living with the disease is rapidly improving. We can continue this progress by building awareness and support.”

Find the scleroderma event closest to your community by visiting the events page at scleroderma.ca. More resources are also available at hardword.org.

Spread awareness about scleroderma by supporting the cause on Twitter @SclerodermaCAN and Facebook; join the conversation with the hashtag #HardWord.