More than 300,000 Americans are living with scleroderma, but no two people experience this disease the same way. This June, as part of Scleroderma Awareness Month, the National Scleroderma Foundation is amplifying the voices of people living with scleroderma who will be sharing stories from their unique journeys with the disease.
Scleroderma is a rare rheumatic disease that affects connective tissue and the vascular system causing fibrosis in the skin and the internal organs, which can be life-threatening. The cause is not yet known, and there is no cure. The face of scleroderma includes more than 300,000 Americans of all ages, genders, and backgrounds.
“There is still so much that we don’t understand about scleroderma, but by listening to the stories of people who live with this disease each and every day, we can better understand how to provide support and help improve their lives,” said Mary Wheatley, CEO of the National Scleroderma Foundation.
Throughout the month of June, the Foundation is encouraging everyone to show support for people living with scleroderma and the ongoing research to find a cure. Scleroderma advocates will share videos describing their experiences with scleroderma and will light up their communities with teal lights to raise awareness about scleroderma.
National Scleroderma Foundation chapters across the country will host Stepping Out to Cure Scleroderma fundraising and awareness events throughout the month of June.
“Stepping Out to Cure Scleroderma walks are great opportunities for the scleroderma community to come together, connect and raise awareness about this disease,” Wheatley said. “In addition to raising funds to advance research, these walks are an opportunity for people living with scleroderma to be seen and heard by their local communities.”