A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly. When I was…
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
After I was diagnosed with scleroderma in 2001, I found myself having some strange thoughts, such as, “What’s wrong…
Life with scleroderma can be a struggle. Sometimes, when the pain seeps into my bones and fatigue keeps me…
I’m a lot of work, even on a good day. Living with scleroderma requires me to spend a lot…
“Wow, you were just discharged from the hospital? You look healthy to me.” I can’t remember a time when words…
Humans have known war almost since humans existed. Thousands of civilizations and religious evangelists have started wars to conquer their…
As 2022 comes to an end, I’m reflecting on the year and trying to look forward to all 2023 might…
The holiday season is often a happy time. Giving gifts, spending time with family, and celebrating with food and conversation…
Many people have come and gone in the years I’ve been battling scleroderma. However, the friends and family members…
It’s beginning to look an awful lot like the holidays! Everywhere I go I see festive decor and signs for…