As a woman with scleroderma, I’ve faced many unknowns regarding my body and health over the last 21 years.
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.
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Articles by Amy Gietzen
About a month ago, I popped into Target. I grabbed a cart and started to sanitize it. While wiping the…
Lately, my life has been at a standstill. For the past 15 years, I’ve found purpose in being a…
I have always thought of myself as someone who thrives on being independent. But living with scleroderma does not…
When I was diagnosed with scleroderma 21 years ago, it was painful to learn that I was no longer…
“I used to …” I found myself saying that more and more as the years went on, despite my best…
Most of the time, I try to remain positive and open-minded. I learned this a long time ago while dealing…
Scleroderma comes with a plethora of uncommon and unbearable symptoms that may arise before or after diagnosis. For the…
I need a root canal! I have escaped the drama of this procedure for over 40 years, but now…
As a child, I constantly felt like I received the short end of the stick. In my immature mind, my…