In this blog post we’re highlighting Joe Sanchez, an Inclusion Body Myositis (IBM) patient who’s had a remarkable journey spanning 15 years.
Joe’s story began when he started experiencing a few confusing symptoms. “I was tripping and falling down on perfectly flat surfaces,” he said. “I’d fall down and look behind me, and the floor was perfectly flat. I noticed that I would bend over to tie my shoe, and I couldn’t stand back up. I’d have to have somebody pull me up. I worked at Home Depot, and I came in at 6am to open the store by rolling up the garage doors. And I noticed I couldn’t do it anymore, I was having problems raising my arms over my head. I had no energy, I couldn’t concentrate. The fatigue got so bad that I couldn’t read a screen.”
At first, Joe’s doctor thought he was having a stroke, but none of the markers matched. After a few months, he ran into another patient who recommended a rare disease neurologist, which is when he finally got diagnosed with IBM.
When his doctor diagnosed him, she also gave specific instructions: no physical activity of any kind. There were no medical treatment options available. “When they tell you that, it’s like, what am I supposed to do, sit in a room the rest of my life? I’m not supposed to move, and I can’t take any medicine?…We’re not given hope of any kind.”
It was only three years later that doctors changed their advice and started recommending exercise for IBM patients. But Joe got a head start. At TMA’s 2014 Myositis Patient Conference, he observed that the patients doing best were also the patients who were walking a lot. So he hired a personal trainer and started physical therapy. It started with doing three laps around an indoor track. Soon it became four, then six, and now, 10 years later, Joe’s record is 23,000 steps in one session (that’s a 3 and a half hour walk!) “Today, I’m more functional and mobile than I have ever been in my entire life.” He credits an institution named Kourage Health in East Texas, and his trainers there, for his success. “What kept me going was a trainer that believed in me and inspired me. I can actually do things that people told me I couldn’t do.”
Doctors are shocked to see videos of Joe walking on a treadmill, throwing an 8-pound ball, or playing table tennis – they can’t believe he actually has inclusion body myositis. His videos have been shared with medical advisory boards and shown at conferences in the US, UK, and Sweden. Joe’s not only transforming himself, but the medical industry and the future of treatment for all patients in his community. “I’m breaking all the rules,” he says.
Today, Joe is a powerhouse of the myositis community, posting messages of hope and support daily on the Myositis Warriors Facebook group and attending every single TMA conference. He stresses the importance of having a great support system and taking advantage of the resources around you. His message to other IBM patients? “Don’t let what you can’t do interfere with what you can do. And don’t let other people tell you what you can’t do. You need to find out for yourself what you’re really capable of.”
At Leapcure, our mission is to uplift patient voices to make impactful medical breakthroughs for everyone, with everyone. To learn more about myositis or dermatomyositis, check out our Leapcure website.
You can also watch more patient stories from advocates at Leapcure’s Advocacy Corner!
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