Living with Scleroderma

Jennifer’s Story: The Journey to Diagnosis

By April 27, 2022June 8th, 2022No Comments

Jennifer was diagnosed with scleroderma in 2018—years after seeking help. “I started having Raynaud’s attacks in 2013 along with other weird things like red blotches all over my face, later learning they are telangiectasia,” Jennifer says. But when she brought these concerns to her doctor, she was dismissed, and the doctor even suggested mental health services instead. “That really caused me to question myself and think I was crazy.”

She developed more symptoms, like fatigue and esophageal problems, but nothing changed in her treatment until her husband was stationed in Miami and Jennifer met a new primary care doctor. “She has changed my life. She listened, she believed me, she saw my weird symptoms,” Jennifer says. “She sent me to a rheumatologist and ran tests confirming I had limited scleroderma.”

As Jennifer has learned to live with this disease, she has become a scleroderma advocate, because lack of awareness causes delays in diagnosis and treatments. Ultimately, she looks to research as a source of hope for finding a cure, and for now, “better treatments making life for those who live with it easier.”