How would you feel if a doctor told you to “get your affairs in order”?  That is what Amy Gietzen was told when she was just 19 years old.

Amy had been experiencing severe joint pain and swelling in her wrists, hands, shoulder, and elbow.  At first, she attributed her symptoms to the physical requirements of her job. When they persisted, she went to a doctor and was diagnosed with Raynaud’s disease. An orthopedic doctor later diagnosed her with scleroderma, a rare vascular condition that leads to the hardening of the skin and connective tissue. This was just the beginning of a long, winding, and challenging journey.  

At the time of diagnosis—when the doctor recommended that she get her affairs in order—Amy was attending college to be a nurse, working, and having fun with friends. She was devastated by what the doctor told her. She tried hiding her condition from her friends and co-workers; however, a lot of physical changes were happening such as the skin on her hands was getting tight and she was getting ulcers on her fingers. As her condition progressed, Amy had to have fingers amputated and has endured numerous surgeries. She has had to figure out simple ways to do daily tasks. Amy has also dealt with a range of emotions, including anger and grief at the loss of independence and feelings of guilt because her parents have spent their retirement years caring for her.

As a rare disease, scleroderma is not only hard to diagnose, but also challenging to find the right doctors to help treat it. For Amy, it took five years to find the right team of doctors needed to treat her condition.  Amy lives in Buffalo, New York, but travels to Pittsburgh, Pennsylvania to see most of her physicians.  Her healthcare team is comprised of a general practitioner, 2 rheumatologists, 2 pulmonologists, a cardiologist, a gastroenterologist, a pediatrist, an ophthalmologist, and a dental specialist.  All of these physicians need to communicate with each other in order to stay abreast of and coordinate Amy’s care.

Even though scleroderma altered her hopes of being a nurse and her dreams of getting married and having children, Amy has persevered for 18 years and counting since receiving the diagnosis and she has become a tireless advocate, raising awareness about the condition and inspiring others along the way. She has spoken to countless medical students across the country and, since 2017, has been a keynote speaker at the Steffens Scleroderma Foundation’s Interprofessional Education (IPE) forums. Additionally, Amy has spoken to members of Congress as part of patient delegations in support of legislation that will benefit scleroderma and other rare disease patients. She also serves on the board of the Scleroderma Foundation Tri-State Chapter board and sits on the Patient Advisory Board for SPIN (The Scleroderma Patient-centered Intervention Network). While Amy struggles every day, she has found a way to turn the negative into a positive by sharing her story and being an advocate for the scleroderma community.

Amy has a column on Scleroderma News.  Her articles are informative and inspiring. Stayin Alive With Scleroderma (Scleroderma News)- Amy Gietzen.

Amy