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By Colleen Layton My journey with myositis has been a little more than twelve years long now! I was first diagnosed at the age of 43 with polymyositis after a six-month-to-one-year long history of falls, weakness, and joint/muscle pain. My most telling symptom: I was unable to properly ride a bike, when I had no…
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Donna DeFant loves motorcycles. For decades, she hung out with Harley owners and spent her free time riding. In 2003, she started noticing weird bumps on her hands and a rash around her eyes. Her dermatologist burned the bumps, thinking they were warts, which made them worse. It took three years before Donna was diagnosed…
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By Jen Swisher Even though she is a medical professional and diagnoses others every day, Jen Swisher still suffered dismissals and misdiagnoses in her two-year journey to a dermatomyositis diagnosis. She wrote this article about her odyssey for Myositis Awareness Month (MAM) in 2024 for the Hippo Education website. This year, Jen will serve as…
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By Kambiz Roghanchi Livingston, New Jersey, February: A frosty gust nipped at my skin, but the real chill crept from within. Crimson tendrils snaked up my arms, an alien map drawn by my own traitorous immune system. These Gottron’s papules, these fevered blossoms of war, were the first whispers of a coup. My body, once…
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Alicia Lowther’s husband Dan found out after years of misdiagnoses that he had inclusion body myositis (IBM). It was a shock to both of them. “Dan decided he was going to spend his energy enjoying his life rather than delving into myositis issues, which I support,” Alicia said. She reached out to The Myositis Association…
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