Staying Alive With Scleroderma — Amy Gietzen

A graphic depicting a skeleton walking through a forest with a boombox.

Amy resides in Buffalo, New York, with her amazing, supportive family, friends, and her three cats. As a patient advocate and public speaker, she’s traveled across the country educating students, clinicians, and medical professionals about scleroderma. Amy was diagnosed with systemic scleroderma in 2001 at the age of only 19.

As a consequence of her scleroderma, she has also developed idiopathic pulmonary fibrosis, pulmonary hypertension, along with some major heart rhythm issues. Amy’s passion in life is helping others, and her hope for this column is that rare patients who read it will feel empowered and use their voices to speak up about their medical journeys to incite change and awareness for the rare disease community.