Art Is My Outlet for Coping With Scleroderma
When I was diagnosed with scleroderma at 19, it was dumped into my lap. The doctor simply looked at me and said, “Get your affairs in order and work as long as you can. Scleroderma has no cure and…
Amy Gietzen resides in Buffalo, New York, with her amazingly supportive family, friends, and three cats. She’s a patient advocate, the creator of the young adult virtual support group SYNC, and a public speaker who travels across the country educating students and medical professionals about scleroderma. Amy was diagnosed with systemic scleroderma in 2001 at 19 years old. She’s also developed idiopathic pulmonary fibrosis, pulmonary hypertension, and major heart rhythm issues. In 2020 she received the Ernest Dupont Award from the Steffens Scleroderma Foundation, of which she is the secretary. In 2019 The National Scleroderma Foundation awarded Amy with the Volunteer of the Year award for her work in supporting young adults living with scleroderma.
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