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.

In 2010, he started a Facebook group for people living with myositis.

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.

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.