Living with Scleroderma

Jessica’s Story

By October 10, 2022No Comments

“I started to lose the color of my skin, and my fingers wouldn’t close all the way in a fist,” says Jessica, thinking of her early scleroderma symptoms. After talking to a neurologist and dermatologist, she was diagnosed with vitiligo and nothing else.

But after two years of continued issues, talking to her primary doctor about a sinus infection led to more questions than answers. After tests and talking to a rheumatologist, “I was handed a pamphlet and told, ‘It doesn’t look good—you have scleroderma.’” This was in 2010—the first time Jessica had ever heard of the disease.

Today, Jessica says that scleroderma “has taken over my entire body…It’s difficult to be stricken with illness at an age where you’re supposed to be finding yourself.” She needs help with simple, daily tasks, from preparing meals to doing laundry. “But this has taught me a great deal of humility,” she says. “Becoming disabled has opened my eyes to new depths of empathy and compassion.”

Faced with the unique complications of scleroderma, Jessica needed an outlet. “I created the Facebook page, Scleroderma Strong, because I wanted to shine a light on such a rare disease,” she says. “I want to show the world that it’s ok to be different and not be ashamed of any illness you’re going through.” Through this work, she’s engaged thousands and built a space where those with scleroderma can draw support from shared experiences.

Jessica looks to research as her best hope for a better quality of life. “If research continues to expand, my lifespan will be lengthened,” she says. “More research equals longevity amongst our community.” Thank you, Jessica, for doing so much to raise awareness and support the scleroderma community as we search for a cure.