Yashira Tirado had been having trouble breathing on and off for several years, which her doctors thought might be adult-onset asthma. She started feeling muscle pain and fatigue. Yashira thought, at age 38, was she just getting old? Then she started getting rashes on different parts of her body.
As Yashira circulated among numerous specialists, her lung capacity fell off a cliff. She said, “I was so weak it was like my soul was not in my body.” Health providers started considering a lung transplant. During her fourth hospitalization, she saw a rheumatologist who immediately recognized her symptoms as dermatomyositis.
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Yashira found The Myositis Association (TMA) online and was relieved to find a trustworthy source of evidence-based information about myositis. She read stories about other patients’ experiences that reassured her. “I realized I was not alone and people do recover with treatment.” The TMA conference connected her directly with world-class experts in myositis.
Yashira needed help to navigate her new path, and she sought a support group of people who spoke Spanish. TMA didn’t have one at the time, but Yashira started a Spanish-speaking group with another co-leader. “Finally people didn’t think I was crazy, and they knew what I was going through. I had never known another person with dermatomyositis until TMA started this support group.”
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