By Linda Thomas<\/p>\n\n\n\n
I just got back from MyoCon25, and honestly? I\u2019m still recovering\u2014in a good way. For those of us living with a rare disease like inclusion body myositis (IBM), this kind of conference is more than just PowerPoints and name tags. It\u2019s a lifeline. A chance to be with people who get it without needing a long explanation, and to hear from experts who actually know what they\u2019re talking about.<\/p>\n\n\n\n
The first thing that struck me was how valuable the breakout sessions were this year. They weren\u2019t just \u201ctalk at you\u201d presentations\u2014they were real conversations. Practical tips on adaptive exercise, nutrition tailored to inflammatory myopathies, and how to navigate daily life when your body no longer cooperates like it used to. There was one especially helpful session about assistive devices\u2014not just what to use, but how to mentally and emotionally adjust to needing them. Another session touched on caregiver relationships, which hit close to home for many of us. It wasn\u2019t all serious either\u2014there were laughs, some gentle teasing, and even some hallway scooter races (we\u2019re not naming names).<\/p>\n\n\n\n
The keynote speaker set the tone from the start: former Representative Steve Bartlett who co-sponsored the original ADA legislation. Hearing directly from someone who helped shape the laws that protect our rights reminded us that advocacy isn\u2019t optional\u2014it\u2019s survival.<\/p>\n\n\n\n
And the closing speaker, Dr. Julius Birnbaum, gave us a gift with his talk Living Well with Autoimmune Diseases<\/em>. He brought clarity, empathy, and just the right dose of humor. His message\u2014and his book of the same title\u2014wasn\u2019t sugar-coated or unrealistic. Instead, it offered hope that felt grounded. Yes, our diagnosis may rewrite parts of the script, but the story itself is far from over.<\/p>\n\n\n\n And then there were the people. My people. The ones who know what it\u2019s like to drop your fork because your grip gave out, or to stare at a staircase like it\u2019s Mount Everest. We swapped tips, emails, and stories\u2014some heartbreaking, some hilarious\u2014and formed bonds that go beyond the conference badge. It\u2019s a strange kind of comfort, finding yourself in a crowd of people with the same rare thing.<\/p>\n\n\n\n The real cherry on top was hearing from the doctors and researchers leading the charge. These weren\u2019t fly-by-night internet experts\u2014they\u2019re the ones in the trenches, studying this disease from every angle. They shared updates on ongoing clinical trials, new diagnostic approaches, and the latest thinking on what actually causes IBM. And they did it in plain English, without making us feel like we needed a medical degree to keep up.<\/p>\n\n\n\n So yes, I came home tired. But also encouraged. Seen. Reminded that even though this disease is rare, I am not alone\u2014and neither are you. MyoCon 2025 gave us knowledge, support, and community. And that\u2019s more powerful than anything you\u2019ll find in a textbook.<\/p>\n\n\n\n