After her scleroderma diagnosis, Tatiana B. (dx 2020) knew she wanted to help move research forward. A recommendation from her rheumatologist led her to enroll in CONQUER. “I feel deeply...
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At just eight years old, Grace Pour was diagnosed with scleroderma. These days, she is a passionate advocate for scleroderma awareness, sharing her story with medical students, organizing fundraising events,...
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“When I was first diagnosed, I was very depressed. I didn’t know what this illness would do to me,” Tameka N. (dx 2012) remembers. “Now, I just enjoy life as...
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"A year after I was diagnosed with scleroderma, I started to get very winded walking very short distances," Jackie L. remembers. "After testing, I received a diagnosis of interstitial lung...
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“Living with PAH and scleroderma has been difficult, but it was manageable,” says Barb H. (dx 1994.) “It never stopped me from doing something I really wanted to do.” Barb...
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“My journey to diagnosis was long and frustrating,” says Monika H. (dx 2017). “The first symptoms appeared as swelling and tingling in my fingers and toes, which I initially brushed...
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"I’ve learned that I’m stronger and more adaptable than I gave myself credit for," says Bri S. (dx 2020). "A lot has had to change since scleroderma forces you to...
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“I want people to know that you can live a full life with chronic illness,” shares She Shutes (diagnosed in 2017). “It’s not over—it’s just different.” In this video, she...
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“Scleroderma research is important to me because our lives would be drastically different without the progress made thus far," says Tiffani P. (dx at age 18.) “At first, it was...
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“My experience with interstitial lung disease (ILD) didn’t start with a diagnosis—it started with a feeling,” Joseph W. recalls. “Back in middle school, around 2009, I was active in sports...
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