Bid to raise awareness about Scleroderma, a crippling autoimmune disorder

sclerodermaIf you’ve ever silently questioned someone wearing mittens on a warm spring day, the answer may be scleroderma. Or wondered why a woman, who otherwise appeared middle-aged, wore a face as wrinkle-free as her teenage daughter. The answer may be scleroderma.

But chances are you don’t know scleroderma. You don’t know the pain and challenges that the relatively rare autoimmune disorder wreaks on sufferers. That’s why a group of nonprofits is working together in June during Scleroderma Awareness Month. They’re partnering so that more people know scleroderma and fewer patients will suffer in silence.

Like Nancy Stephens. Stephens was diagnosed with scleroderma 12 years ago. She leads a support group inMichigan. It’s cathartic being with people who understand her plight. Compassion goes a long way, she said.

“It’s good therapy for me,” Stephens said. “The biggest thing is knowing that they have the same problems I do. I can go to them and they can come to me anytime and say ‘I’m having a really bad day today’ and not have them say back, ‘well, you look just fine.'”

During the month of June, North America’s leading scleroderma advocacy and research organizations—Scleroderma Foundation, Scleroderma Research Foundation and Scleroderma Society of Canada—will combine marketing efforts to boost awareness and spark compassion. This year marks the agencies’ third consecutive annual campaign effort under the name “Hard word. Harder disease.” Together, they’ve grown the scleroderma network and increased online buzz and engagement.

The campaign theme touches on the difficulty of the word and the gravity of scleroderma, a rare disease with no known cause or cure. It will run across partner Facebook and Twitter channels (#hardword) throughout the month of June, with visuals and copy that educate and challenge people to take a pledge to tell one person about the disease. The campaign includes blogger outreach in North America and a microsite,, with general information about and links to additional resources.

New this year is a virtual flash mob through Thunderclap. The partners and supporters worldwide will use the social media tool to share a campaign message at the same time across Facebook and Twitter. On June 29, World Scleroderma Day, the message will encourage people to learn about scleroderma and tell others about the disease.

Scleroderma is a crippling autoimmune disorder characterized by a thickening and hardening of the skin that is so severe, it steals away the use of patients’ fingers, hands and limbs. As it advances across their bodies, the uncontrolled growth of fibrous tissue can damage patients’ hearts, lungs and other organs, often leading to a prolonged and painful death.

Scleroderma Society of Canada
The Scleroderma Society of Canada serves as an advocate nationally for those affected by the disease and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives. The Scleroderma Society of Canada is committed to promoting public awareness, supporting those affected by scleroderma and funding research to find a cure. Until then, we will work to improve the quality of life for those with scleroderma. CNW

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