Being diagnosed with scleroderma is uncommon, but for Missa P. (dx 2023), the experience was even more unique—as it was one she shared with her late mother, Karen (dx 2012).
“I watched my mother research ways to manage her scleroderma symptoms, not realizing that one day, I’d be doing the exact same things to manage my own,” she says.
Both she and her mother first experienced symptoms of Raynaud’s phenomenon in their early 30s. Karen was initially misdiagnosed with lupus in 2002, and it took a decade before she received the correct diagnosis of systemic scleroderma. At around the same age, Missa also started to develop symptoms and eventually received a scleroderma diagnosis.
Scleroderma changed her mother’s life significantly, causing her to leave work and focus on managing her health at home. “Going out to events was difficult for her, and she preferred to stay at home most times,” Missa explains.
For Missa, climate played a huge role in managing her condition. “I lived in Iowa for five years. The winters were too extreme—it would get to -15°F at times,” she says. “My job was able to help me move to California, and this has helped keep my Raynaud’s episodes down significantly.”
Through it all, Missa remains committed to raising awareness, especially for families like hers, where both a mother and child share the diagnosis. “There may be others going through the same thing. I want to be a voice for them and show that we are a community,” she says.
In 2022, Missa’s mother passed away from complications of scleroderma, a loss that continues to drive Missa’s commitment to supporting research. “My mother wanted to see progress for people with scleroderma. I want the same for future generations,” she says. “Most people don’t even know this disease exists. That’s why research is so important—so we can change that, and one day, find a cure.”
We are grateful to Missa for sharing her story and for her dedication to raising awareness. At the Scleroderma Research Foundation (SRF), we share her passion for funding scleroderma research.
