Dear Scientist, 

I was diagnosed with Polymyositis at age 27, and my diagnosis has since changed to Dermatomyositis. I have had to find “my new normal” several times over the years due to changing symptoms and abilities. I am now 46 years old and wondering if my current quality of life is the best it will be.

It was a five-year journey for a diagnosis. That journey started with an extreme sensitivity to the sun, itchy rashes and bleeding, and scarring rashes on my scalp which all seemed to come out of nowhere. As it developed, I was met with severe pain and fatigue, limiting what I could do. My family and friends had a hard time understanding these “invisible symptoms.” I was no longer the going-to-party-with-friends Jerry. Instead, I was a person who had a hard time just watching a full movie. I lost many “friends” at the start of my illness and I had to leave the workforce. I went from a very active social life to being lonely, depressed, and worried for my future. 

When I was diagnosed there was not much available for patients in terms of education that patients could understand, and almost no support. After living in isolation for about seven years, I decided to take action and created a Facebook support group to connect others living with myositis and our care partners. This became a family. In managing and participating in the group, I discovered needs in the myositis community that were not being addressed. In 2015, together with Emily Filmore and Sandy Block, I founded the all-volunteer, patient-centered 501c3 nonprofit organization, Myositis Support and Understanding Association (MSU).  

Our goals at the start were to launch groups on Zoom for a more personalized peer-to-peer experience, launch a comprehensive myositis website written with patients in mind, and set up outreach via social media. 

Those goals were achieved, and MSU continues to grow quickly. We have added more support groups on Zoom, Clubhouse, Facebook, and Inspire. By having volunteers, mostly patients and care partners, running the organization, it helps give a voice to the community and creates a deeper understanding. Myositis patients are at the table now in all partnerships. 

I am inspired to continue giving each day as I hear – and experience – the ongoing struggles myositis patients face. Patients are often misunderstood because myositis can be an invisible illness, with continued difficulty in obtaining a diagnosis. These difficulties can delay treatment that may help prevent long-term muscle, skin, lung, and other organ damage. 

I’ve tried various treatments. Some of them haven’t worked at all, others have led to dangerous complications. I have never reached remission. We need new, accessible, and tolerable treatments specific to myositis. 

As someone who struggles with Dermatomyositis, as well as someone who is deeply connected to a community of people who share that struggle, I know what the patients of this illness are up against. My hope for the future is that there will be new targeted and effective treatments for Dermatomyositis.

Sincerely, 

Jerry Williams