“Scleroderma has changed my life,” says Jaclyn R. (dx 2019). “It has made me understand how to have patience. I have learned to not take things for granted, and to live life to the fullest.”
“My first scleroderma symptoms were skin thickening in my arms, all the way up to my elbows,” she recalls. Over the following years, Jaclyn’s condition progressed, bringing additional complications including celiac disease, Raynaud’s phenomenon, GI involvement, and vascular issues requiring stent procedures.
“I was told that I was too young to have scleroderma,” she remembers. “It took nearly three years and a skin punch biopsy before my diagnosis was finally confirmed.”
Despite the challenges, Jaclyn’s determination has never wavered. “It’s the little things that you don’t expect to be difficult that really get to me,” she says. Jaclyn manages all of this while also serving as the primary caregiver for her 16-year-old son, who has autism and epilepsy.
“Scleroderma doesn’t come with a manual,” Jaclyn says. She has learned to listen to her body, rest when she needs to, and ask for help. “I have learned that whatever I don’t get to today becomes tomorrow’s problem.”
She also knows what it’s like to have her condition misunderstood. “Many people with scleroderma are judged unfairly,” Jaclyn says. “I feel like I don’t seem disabled enough, even with my handicapped placard.”
Connecting with others who truly understand has made all the difference for Jaclyn. “I would love to continue to meet more people with scleroderma and be even more involved in the community,” she says. “I want to let people know they are not alone.”
For Jaclyn, that sense of community is exactly why scleroderma research matters. “Research is what keeps us scleroderma patients motivated to keep fighting, and to hope for a cure someday,” she says. “We are all in this together.”
We are grateful to Jaclyn for sharing her story. At the Scleroderma Research Foundation, we are committed to bringing together a community of patients, advocates, and researchers—all working toward the same goal: a cure.
