By Maria Dastur, Executive Director of Scleroderma Foundation
For Scleroderma Awareness Month in June, it’s important to remember that no two journeys with scleroderma are the same. The Scleroderma Foundation supports each individual living with this chronic illness and their families every step of the way, with fundraisers, support groups, virtual educational tools, medical resources and more.
Scleroderma is a rare disease that affects over 300,000 people in North America, and 80% of scleroderma patients are women. Scleroderma literally means “hard skin” and can cause serious damage to internal organs.
Many patients suffer with scleroderma for years before getting a proper diagnosis. The illness is difficult to detect since it’s relatively uncommon and has a wide scope of symptoms. Typical signs range from mild to life-threatening and can include joint pain, tightening and swelling of skin, ulcers, chronic cough, fatigue, headache, shortness of breath, and weight loss.
For the entire month of June, members of the Scleroderma Foundation are spreading the word about the autoimmune disease by connecting the community to resources. Advocates from 32 states recently submitted a request to their governor, requesting the issuance of a Scleroderma Awareness Month state proclamation. Additionally, the Scleroderma Foundation has many Stepping Out to Cure Scleroderma fundraising events happening across the country. The scheduled occurrences give the scleroderma community a chance to get together and continue raising awareness, as well as funds, to fight the disease.
The Scleroderma Foundation is gearing up for the National Scleroderma Conference 2021 on July 17-18th. The virtual event attracts hundreds of people living with scleroderma, their family members and caregivers and the world’s leading scleroderma healthcare professionals and researchers. Visit www.scleroderma.org to learn more about scleroderma, the conference, or to find a chapter near you.
Editor’s note: Allsup helps individuals living with lupus and other disabilities apply for SSDI and return to work.