Amy Gietzen, 37

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I was diagnosed with systemic diffuse scleroderma eighteen years ago at the age of nineteen. Being told as a teen that you have a debilitating, most likely terminal illness that has no known cure or origin was more than a shock. It was like being pushed in front of a moving train.

The doctors did a series of tests. My ANA [antinuclear antibodies test, a primary test to evaluate patients for autoimmune disorders] was positive with high levels, my pulmonary function test was abnormal for a woman my age, and my chest x-ray showed the start of scarring around the outer edges of both of my lungs. I thought, “How could this be happening?” I was a healthy, active young woman.

I wanted/needed to know everything I could about this disease that by now was affecting the skin on my face, my hands and fingers, my lungs, my throat and how I swallowed and ate food. But locally, I could not find a single soul that could even spell it correctly, let alone prescribe me medications and order tests. Then I came across a hospital located in Pittsburgh, Pennsylvania. At this hospital was a doctor who had specialized in scleroderma and scleroderma research for over forty years!

Fast forward about fifteen years later, and I am still going to see that doctor. Even though I have limited hand, fingers and wrist motion, arthritis and stiffness daily, difficulty walking and moving, pulmonary fibrosis, heart palpitations and Raynaud’s Phenomenon, I most definitely consider myself lucky. For starters, it definitely could be much worse symptom-wise, and to be frank I could not even be alive right now.

Living my life with scleroderma wasn’t a choice I got to make, and it most certainly was not the kind of choice you’d think would change your life for the better, but in my case that is exactly what happened. Scleroderma has given me a new outlook on my life and taught me to savor the time and the people in my life that I love and care about. Although I am faced with obstacles daily that try to break my spirit, I will not let this disease dictate my life path and the stops I make on the way. I just might have to take a few more stops than I would have liked to. Life is all about rolling with the punches and making the most out of the life you are given, and that is just what I intend to do and a hell of a lot more!