It took years for Jerry Williams, 46, to receive a diagnosis, and many more years for a correct diagnosis. 

Dermatomyositis, a rare autoimmune disease with a wide range of symptoms including severe skin rashes, muscle weakness, and fatigue, first started affecting Jerry when he was 25 years old and living in Chicago. When the symptoms began, including rashes and an intense sensitivity to the sun, he thought perhaps it was stress. His symptoms concerned him enough that he moved back to Delaware to be with his family. 

One day, he was standing on his parent’s porch and he collapsed. “That’s when the next part of my journey began,” says Jerry.

What followed was a series of hospital visits, resulting in a diagnosis that ruled his illness psychosomatic. “I felt so devalued as a human being,” Jerry says. “Nobody sat down and talked to me about this. It wasn’t until I looked at my discharge papers that I saw this was my diagnosis.” His care was delayed eight months while he attended psychiatric sessions to prove it wasn’t “all in his head.” Due to the difficulty of diagnosing dermatomyositis, his care was delayed for almost a year and a half while he attended psychiatric sessions and underwent further tests. 

Throughout this time Jerry was getting weaker and weaker, and the barriers to care were taking a toll on his physical and mental well-being. “No one prepares us for the mental health side effects of dealing with chronic illness,” Jerry says. He also grappled with his identity. “I was always a positive person,” he says, but the uncertainty around his health, his inability to participate in his usual activities and be social, and the pain and fatigue were making him think otherwise. 

Following these obstacles, he met with a new doctor who gave him his initial diagnosis of Polymyositis. “I felt a sense of relief that, you know, it really wasn’t all in my head, right? I finally had something, but at the same time I was just so fearful for my future,” Jerry says. 

It wasn’t until about 12 years later, when he went to see a new dermatologist that she put everything together. “She looked at all my past records and biopsies and slides, and I actually had skin symptoms when I went to her,” Jerry says. It was then that he finally received the diagnosis of Dermatomyositis. 

Creating community

When Jerry received his initial myositis diagnosis, he felt alone. “There was very little education out there that I could understand as a non-medical person,” Jerry says. 

Jerry took initiative, knowing that if he felt this way, surely others did too. That’s when he started a Facebook group for Polymyositis patients and care partners. Suddenly, he was meeting other people who could relate.

That Facebook group grew quickly, and eventually Jerry turned it into a nonprofit called Myositis Support and Understanding (MSU), an all-volunteer, patient-led 501(c)3 which focuses on what they refer to as “from the heart support.”

The group, which now has more than 11,500 members, aims to meet patients and care partners where they are. “We all need a place where we have people that understand enough so that you don’t have to explain,” Jerry says. Having a community of people who understand what you’re going through can be invaluable. 

“It saved my life,” Jerry says. At one point, Jerry was on a ventilator and his husband was communicating with the group, giving them updates and sharing their well wishes. Jerry credits his survival with the feeling of community and people pulling for him. 

Finding a treatment

For Jerry, the treatments he’s tried haven’t worked long term. “I’ll get a boost from like, maybe the start, but after a year or two the medication just wears off. It just stops working,” Jerry says. In some cases, treatments he’s tried have led to dangerous complications. 

“As a scientist, you’re trying to understand: What are the drivers of the disease?” explains Janet Buhlmann, director at Centers for Therapeutic Innovation at Pfizer. She explains that one of the methods they use is looking at human genetic data. If they are able to find a correlation between a particular gene and the disease, that can be a suggestion of what needs to be changed. It may point to a critical protein or pathway that’s altered with a particular disease. “If you can figure out what that alteration is…for example, this pathway is overactive, then you can develop something that may inhibit that pathway. Theoretically, you should quell that immune response,” Janet explains. 

“I truly believe that my purpose on earth is to be a scientist and to do what I do now,” Janet says. Working on a potential treatment for Dermatomyositis was one of the first projects she ever worked on at Pfizer. 

Janet and Jerry were able to meet in November 2022 and discuss Jerry’s journey, from his diagnosis to his nonprofit and support group and the work being done at Pfizer for autoimmune diseases. 

She goes on to explain that the goal of her work and her colleagues is to have a positive impact for patients with autoimmune diseases including Dermatomyositis.

“I just have a deep respect for anyone who has one of these chronic illnesses and the strength they have to go through every day,” Janet says.

She goes on to explain that the goal of her work and her colleagues is to have a positive impact for patients with autoimmune diseases including Dermatomyositis. 

“I appreciate it when a scientist takes time to listen to someone like me,” Jerry says at the close of their discussion. 

“Talking to you has reaffirmed why I do what I do,” Janet responds.