Meet Jerry Williams: Connecting and Advocating for People with polymyositis
Jerry felt in the prime of his life. He was a working professional in his mid-20s, he was dedicated to finance and took pride in going above and beyond. When he started noticing muscle pain and weakness, he really didn’t think much about it. He thought that discomfort came from his busy lifestyle.
But the pain kept getting worse until, one day, he was hospitalized after collapsing on his parent’s porch. A long journey of hospitalizations, doctor visits, and tests followed. Some of his doctors believed his symptoms were due to stress. But advocating for himself finally led him to an accurate diagnosis: polymyositis.
Jerry’s journey to managing polymyositis hasn’t been easy. On top of an array of medical complications that have taken a physical and mental toll, he has faced misconceptions that made it more difficult to access care. This experience inspired him to advocate for other people living with polymyositis, with a particular focus on addressing the myth that polymyositis is a painless disease.
There are some doctors that now understand that pain is a reality, that pain is real with myositis. Pain was the start of my illness, the very first symptom, but something that I'm still facing today, still a barrier to a full life, living a full life.
In 2010, he started a Facebook group for people living with myositis.
Patients were out there, we just needed to be connected. So, over a five-year period, we continued to build and grow this community and really listen to what others are going through.
In 2015, together with two other people who were Facebook group managers, Jerry created the Myositis Support and Understanding Association, a volunteer-run, patient-centered, and patient-led nonprofit organization. One program the organization offers is a financial assistance program to help people cover medical devices, medical bills, and travel costs to see specialists. Now, they are moving into efforts to ensure that patient voices are incorporated into clinical research.
Companies like argenx are so important because they're including patients. That is what we really need. Patients are the experts. Having patients at all levels of clinical trial design only brings a benefit to the community.
Throughout the community he shaped, Jerry has found acceptance and understanding, which propels him to continue his powerful work. In the future, he hopes to see therapies that are safe and that address the true needs of patients living with polymyositis.
