Living with Scleroderma

#KnowRaynauds with Rose

By February 6, 2021July 16th, 2021No Comments
#KnowRaynauds with Rose

Like many scleroderma patients, Rose’s first clue that eventually led to a scleroderma diagnosis was Raynaud’s Phenomenon. As a freshman in college, she initially thought that her hands were hurting because of writing so much in her early morning classes. But soon she noticed other physical changes, and she realized “that something was wrong with my body.” At first, her doctors diagnosed her with rheumatoid arthritis. It wasn’t until three years later that a different doctor recognized that Rose actually had scleroderma.

Rose often encounters questions about scleroderma and her symptoms, including those caused by Raynaud’s. “People are like why are you wearing gloves while it’s summer time?,” Rose said. She doesn’t always explain her condition, “‘cause it gets long.” But now, nearly 20 years after her diagnosis, Rose wants to share her story. “Because we’re in ‘rona break”—what Rose calls the pandemic—”I need to do something to lift me up. It’s inspiring to talk about it a little bit more.”

Lack of awareness contributed to Rose’s delay in diagnosis. At the SRF, we’re committed to ending these delays and ultimately finding a cure. This is only possible by first amplifying awareness. Thank you, Rose, for sharing your personal experiences with Raynaud’s and its relationship to scleroderma. #KnowRaynauds