Nonprofits Partner in June to Raise Awareness for Scleroderma via #hardword Hashtag

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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Nonprofits raise awareness for scleroderma

Seeing someone wearing mittens on a warm spring day could make you wonder why — and it could be that person has scleroderma. A middle-age woman with no wrinkles can also be a tell-tale sign of scleroderma. The chances that people don’t know the symptoms or challenges of scleroderma are quite high for this rare autoimmune disorder.

Due to this gap in society’s awareness of the disease, a group of nonprofits are working together in June during Scleroderma Awareness Month. Their goal is to get more people to become aware of the disease so that fewer patients have to suffer in silence.

Scleroderma is a debilitating autoimmune disease that is characterized by a thickening and hardening of the skin that can be severe to the point of taking away any possible use of the patients’ fingers, hands, or limbs. As the disease progresses, the untamed growth of fibrous tissue can damage patients’ hearts, lungs, and other key organs as well, often becoming life-threatening.

Nancy Stephens, for example, was diagnosed nearly 12 years ago. She now leads a support group in Michigan. For her, it is a cathartic experience being with people who understand what she goes through every day.

Stephens believes compassion goes a long way: “It’s good therapy for me,” Stephens said in a press release. “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.'”

This month marks these agencies’ third year organizing the annual campaign effort known as “Hard word. Harder disease,” and will feature leading North American scleroderma advocacy and research organizations, such as Scleroderma Foundation, Scleroderma Research Foundation, and Scleroderma Society of Canada, which will partner to combine marketing efforts to boost awareness and compassion. Together, they’ve already managed to grow the scleroderma network and increase social media buzz.

“Hard word. Harder disease” (#hardword) touches on the difficulty of the word and the severity of scleroderma. Throughout June, visuals and copy will educate and challenge people to take a pledge and tell one person about this rare disease.

This year’s initiatives also include a virtual flash mob through Thunderclap. Worldwide partners and supporters will be able to use social media to share a campaign message across several platforms. On June 29, World Scleroderma Day, this message will encourage everyone to learn more and spread the word about the disease.