Amy Gietzen, Scleroderma News Columnist —

Last year, I celebrated the 21st anniversary of my initial diagnosis of systemic scleroderma. Well, it wasn’t really a celebration, and I didn’t have a party with balloons and confetti. It was more of a moment of mourning for the life I had lived before my scleroderma diagnosis, followed by…

Ever since I was a child, my parents fostered in me a solid work ethic and a refusal to quit. Whether I was playing a musical instrument or competing in a spelling bee, my parents always taught me to never give up. They instilled in me strength to fight adversity.

Over 20 years ago, I was introduced to scleroderma at the tender age of 19. Our introduction was brief and pretty one-sided. The doctors told me I was sick. They shared that scleroderma was incurable and could be fatal. In that moment, I thought, “Nah, that won’t be me!” At…

Have you ever met someone and felt like the stars were aligned and everything was right in the universe? That’s what it was like to meet my friend Cat Davis. In 2016, I was in Washington, D.C., for Capitol Hill Day, an advocacy event sponsored by the National Scleroderma Foundation. I…

Twenty years. That’s how long I’ve been living with scleroderma. That’s half of my adult life! Over the years, I’ve learned how to cope, be it physically (not being able to do things without help) or emotionally (living with a disease that changes your entire life). I’ve tried my…

I never was the girl who aspired to be a wife and have children. That lifestyle was never on my radar. As women, we often hear other women saying, “I’ve dreamed about being a wife or a mother since I was a little girl!” That was definitely not me. When…

I can’t breathe, literally! At times I feel like I’m drowning in my own body. Living with scleroderma can be complicated — not because of the disease itself, which has a mind of its own, but mostly due to symptoms and side effects acquired along the journey. Early on in…

When people learn that I have scleroderma, they tend to react in one of two ways. Some offer pity and sorrow and treat me as though my life were over. They’ll look at me like I’m a lost kitten or mistakenly assume I’m now dependent on other people’s mercy…

Eating is a sacred ritual in my life. I live for the aroma of freshly baked rosemary bread or the first bite of homemade chocolate chip cookies. Between the salty dough and the semisweet chocolate, the flavors are almost indescribable. I am also passionate about trying new foods. But eating…

I like to refer to myself as a candy-coated treat: a hard shell on the outside with a soft, gooey middle. Since being diagnosed with scleroderma, I’ve often had to toughen up my hard shell to take on the difficult changes — like hand and facial deformities — this disease…