Anna G. (dx 2019) was just seven years old when she began displaying subtle but concerning symptoms. "The earliest signs that something wrong was when we noticed that her left...
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Traveling with scleroderma can present unique challenges—especially when oxygen is part of the equation. "I’ve been traveling with oxygen for almost seven years, mostly for medical appointments," Dee B. (dx...
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For years, Beatrice V. (dx 2023) searched for answers, visiting an array of specialists who were unable to piece together her puzzling symptoms. “Over and over, I was told it...
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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)....
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Did you know that 300 million people worldwide live with a rare disease? In this video, Elisabeth K., PhD (dx 2021) shares why she believes that funding research on rare...
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February is Raynaud's Awareness Month, and we’re sharing stories that highlight the real impact of Raynaud’s and scleroderma. In this video, Anita reads a heartfelt letter written by her daughter,...
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“My third-grade teacher called my parents after I almost passed out during recess,” Tomisa S. (dx 1993) recalls of her initial experiences with scleroderma. “Later that day, my mother took...
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Melissa’s journey to a scleroderma diagnosis was anything but straightforward. It began in 2008 with Raynaud’s symptoms in her hands and feet, as well as chilblains and nodules on her...
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Dedication, commitment, and lifelong love–the Kosmach family embodies it all. Since 1995, they have poured their hearts into fundraising for scleroderma research in memory of their beloved mother, Joan Kosmach....
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“My mom’s journey was difficult to wrap my head around,” Katie L. shares of her mother's experiences with scleroderma. "I learned over time that there would be no quick fix...
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