Amy Gietzen

Secretary, Executive Committee Member

Amy Gietzen from Buffalo, New York is both a scleroderma patient and Patient Advocate, whose mission includes raising awareness of Scleroderma on many levels. Amy’s diagnosis came at the early age of just 19 years old. Her journey followed many twists and turns. Realizing her needs as well as other young adults living with scleroderma might be different, she started to advocate for young adults and travel to various colleges and hospitals, support groups, and conferences to speak about her journey and educate clinicians. In 2016 Amy created a virtual outlet for patients to connect, with The Scleroderma SuperStarz on Inspire. She continues to provide support through her virtual meetups called SYNC and through her work with SPIN (Scleroderma Patient-Centered Intervention Network. She was elected to sit on the Scleroderma TriState Chapter’s Board of Directors in 2020, Amy started to work with the Steffen’s Foundation as a Keynote speaker and panelist for their first Interprofessional Education Event in 2018. From then on, her passion for helping educate medical students and professionals took off. She has been involved with the IPE events ever since, also volunteering on the EAC Committee and the Events Committee, and as of 2021 a newly elected Board member to the Steffens board of directors. She used her skills as a patient advocate to help spearhead a training seminar for patients who participate in the IPE every year called the Art of Advocacy. Her awareness and advocacy efforts continue to grow as she moves past her 20-year mark of living a life with Scleroderma and she has no intentions of slowing down.

Amy has written several pieces for her column on Scleroderma News.  Her articles are informative and inspiring.  Staying Alive with Scleroderma