MyoCon! Early Bird Pricing Ends July 1st.
By Jim Shea
My journey with myositis began in the summer of 2024. I started having trouble getting out of chairs, climbing steps, and even swallowing. At first, I didn’t know what to make of it. By early October—only about four months later—I had an accurate diagnosis: immune mediated necrotizing myopathy. In the world of rare diseases, that’s practically lightning speed.
The impact on my life, though, has been significant. I lost six months completely. From October 2024 to April 2025, I was very sick. Managing this disease has become part of my daily routine: infusions, doctor’s appointments, exercise, and learning to adapt to new physical limitations. But it hasn’t all been negative. Along the way, I’ve met some truly remarkable health care providers—people whose compassion and expertise have made a real difference.
I’ve also been surrounded by tremendous support. My wife has been extraordinary, providing care day in and day out. My adult children have taken leave from work, traveled long distances, and spent countless hours helping me and just being present. My extended family—I have ten siblings!—and friends have shown up in every way imaginable—visiting, encouraging, even offering financial support when needed. I’ve never felt alone in this.
My care team has been unbelievable. Every doctor, specialist, and infusion provider has shown deep knowledge, empathy, and commitment. Their support reminds me constantly how fortunate I am to have them in my corner.
If I could tell medical students one thing, it wouldn’t be about myositis specifically. It would be this: keep an open mind. Listen. Keep learning. Rare diseases require curiosity and humility, and patients depend on both.
TMA has also been a tremendous resource for my family and me. It’s given us information, support, and a community of people who understand exactly what we’re facing. Knowing others are walking the same path makes the journey feel less isolating.
The most useful thing for me has been to stay active. Some days it feels overwhelming, but pushing myself to do as much as I can has been essential to improving my health.
For others on this journey, here’s what I want you to hear: Ask for help. Be flexible. Celebrate your successes—every single one.
