‘When I got diagnosed, the doctor said I had to come back in a few days. Little did I know I’d be coming back for the rest of my life.’

Middle Island

“I was 17 and shoveling the driveway; my hands got so cold that my parents said it must be frostbite. My fingers got so swollen that I had to get my class ring made bigger. Soon, I had to get it made smaller again because the skin got tight. The pediatrician said I was fine. My father brought me to a dermatologist who said he thought I had scleroderma. I’d never heard that word.

I am still here. You can survive it. Never give up.

“When I got diagnosed, the doctor said I had to come back in a few days. Little did I know I’d be coming back for the rest of my life. He said the life expectancy is two to five years because it makes the skin get hard and tight all over your body. The internal organs become like rocks. No matter how much physical therapy I did, my fingers were permanently bent. Raynaud’s phenomenon comes with it. They call it the patriotic disease because your hands and feet turn red, white and blue in response to cold, blood stops flowing. It’s very painful. I rushed to get my BS in three years. I was still alive, so I got my MA in psychology and worked as an applied behavior specialist.

“I’m now [one of] the longest-living survivor of scleroderma. In September, it will be 40 years. I am involved with the National Scleroderma Foundation. I’ve met many people at conferences. It’s a disease that affects every single part of your body. It’s the most cruel, horrific disease ever imaginable, and it’s so rare. When people look at you, they think nothing is wrong, but you have tight skin across your face and it changes your appearance. That’s hard to deal with psychologically. Even though you might look healthy, people don’t understand. I don’t know what it’s like to feel normal anymore because I’ve had it since I was 17, and now I’m 57. I can’t take a bath or sit on the floor without help getting up. I can’t open or close my hands. I have to eat microwaveable food because I can’t cook. I had to go on disability when I was 20. I tell people with scleroderma that no matter what, nobody knows your life expectancy except God. Live every day like it’s your last. You’re not a statistic. I’m proof. When I was given a few years to live, there was hardly any treatment. I am still here. You can survive it. Never give up.”

Interviewed by Iris Wiener