Picture in your mind the most painful thing that has ever happened to you. Now zero in on exactly what…
Amy Gietzen
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.
At Bionews we’re committed to providing the most accurate, relevant, and up-to-date reporting for our patient communities. Our goal is to ensure that everyone has access to disease-specific information that is both trustworthy and easy to understand. You can read more about our editorial policy here.
Articles by Amy Gietzen
When I was diagnosed with scleroderma at 19, it was dumped into my lap. The doctor simply looked at me…
We all face a lot of pressure to appear perfect — educated, attractive, healthy, capable, and independent. This can be…
When the COVID-19 pandemic hit the U.S. in March 2020, it was like time stood still. Many chronic illness…
As young adults, my friends and I used to play a drinking game called Never Have I Ever. The rules…
My traveling days have been few and far between since I was diagnosed with systemic scleroderma in 2001. Now, it’s…
I am a scleroderma patient. Saying or writing that is hard for me. It took 20 years of being a…