"Scleroderma Superstarz"
Amy Gietzen - Patient Advocate
Patient Education Forum - Daemen College
Buffalo NY (2017)

About Ms. Gietzen:
Amy Gietzen is both a Scleroderma patient and a Patient Advocate, whose mission includes the raising awareness of Scleroderma on many levels.

Living with Scleroderma since diagnosis at the age of 19, Amy’s journey followed many frustrating twists and turns, disinformation, uninformed health care providers, and more. It took her years to establish a health care team that knew enough about her disease to provide proper treatment.

Amy’s diagnosis came at an earlier age then most Scleroderma patients. Realizing her needs, and those of children and younger adults with Scleroderma might be different then older patients, Amy’s advocacy led her to form a Facebook group called
“Scleroderma Superstarz” which is geared towards younger patients.

Since 2017, Amy’s advocacy role has expanded. She was invited by the Steffens Scleroderma Foundation to be the Keynote speaker at their “IPE” events. These are Interprofessional Education events attended by student candidates of various heath care disciplines, the purpose is to learn about Sclerdoerma, as well as about the disease from the perspective of the patient. At this event, the students interact with Scleroderma patients, and foster team-building skills with each other. The event was so successful that Amy was invited back 2 more times to date, working with the next classes. Over 400 health care candidates have participated in the 3 events through 2019.

Amy has been part of patient delegations to Capitol Hill, and has met with members of Congress regarding the passage of legislation beneficial to Scleroderma (and other) patients.

She continues to provide support through her Facebook group, support groups and on Inspire.com, a site where patients help one another.

Amy is on the Patient Advisory Board for SPIN (The Scleroderma Patient-centered Intervention Network) and is on the Board of Directors of the Scleroderma Foundation Tri-State Chapter.

Amy eagerly accepts speaking engagements – if you would like more information please contact Amy directly here

The information presented on this site is intended for educational purposes only. Neither the featured speakers, nor the Scleroderma Foundation, nor Starlight Productions ( the producers of these videos) suggest, recommend or endorse any specific treatment for any individual. Patients are advised consult their own health care providers for treatment options.

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