Scleroderma is a crippling autoimmune disorder characterized by a thickening 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 patient’s hearts, lungs and other organs, often leading to a prolonged and painful death.
To boost awareness and compel greater compassion for patients and their families. three leading scleroderma advocacy and research organizations are teaming up during June’s Scleroderma Awareness Month The primary partners are Scleroderma Society of Canada, Scleroderma Foundation and Scleroderma Research Foundation.
The campaign is named “Hard word. Harder disease.” The 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 learn more.
This year’s campaign also includes blogger outreach throughout North America. A microsite, sclerodermaaware.org, serves as the landing page for the pledge and general information about scleroderma with links to additional resources.
“Scleroderma is difficult to diagnose, so patients often suffer for years before receiving a firm diagnosis,” said Maureen Sauve, president of the Scleroderma Society of Canada. “Because scleroderma is often misunderstood or unknown altogether, patients often feel isolated with their struggles. Working together, we can be more effective in broadening consumer awareness.”
“Just this past year, groundbreaking research was announced at Michigan State University that could significantly change the quality of life for scleroderma patients,” said Amy Hewitt, executive director for the Scleroderma Research Foundation. “It’s important that we work together to maximize the momentum of this discovery.”
The campaign will leverage key opportunities throughout the month, notably World Scleroderma Day on June 29.