photo of African American couple hugging.

Members from the myositis community are sharing their experiences.

Read the stories that people from the myositis community have shared, from their journey to diagnosis to their hopes for the future. Each story features the perspectives and experience of someone living with the effects myositis—regardless of subtype.

“It took 3 different doctors over 2 years before I was diagnosed with myositis.”

“It took 3 different doctors over 2 years and a biopsy before I was diagnosed with myositis. Two years after the biopsy, I started using a walker and now I have an electric wheelchair. I can no longer drive, but I used to hunt, wade streams fly fishing, do week-long canoe and camping trips, and take long hikes in the woods. I hate this disease and how it makes me rely on other people. The only good news is I have heard of government funding for myositis research.”

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“Managing my condition is a constant and complex balancing act.”

“Before my diagnosis, I worked 60 to 70 hours or more a week as a teacher. I rarely sat still until late in the evening. Suddenly, walking even short distances became a struggle. Simple classroom activities on the floor were difficult. I would have to crawl over to a table to pull myself up from the floor. Rashes appeared, and my oxygen levels plummeted. The doctors discovered that I had a rare sub-type of myositis known as anti-MDA5 dermatomyositis. Managing my condition is a constant and complex balancing act. My symptoms make it difficult to plan. I am focused on spreading myositis awareness.”

“I haven’t had a day of peace in 4 years...I hope everyone knows no matter how it feels that we’re not truly alone in this.”

“My myositis started by having multiple things start going wrong with my body all at once. I’d have to lie down for hours unable to move. My joints in my knees would have periods of pain so unbearable I’d have to use crutches. My muscles always feel sore and tender especially to someone else’s touch. As if I spend my days weightlifting and my muscles can’t keep up.

I haven’t had a day of peace in 4 years. Doctors weren’t sure exactly what’s wrong or why I’ve developed this. I can’t take my son to the pool like other moms my age. And sometimes I do it anyway so that my child can experience the fun memories with me. But it’s lonely having myositis. I don’t know a single soul around me who has something similar. I hope everyone knows no matter how it feels that we’re not truly alone in this. I hope we all find peace one of these days.”

Members from the myositis community are sharing their experiences.

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