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Considering what it takes to be a bodybuilder with CMT

John Nixon, like me, has Charcot-Marie-Tooth disease (CMT). Based on how he tells his story, the CMT symptoms he’s dealt with since childhood are more severe than mine. When we spoke a couple of weeks ago via video chat, he told me that his feet have been deformed…

When is it appropriate to describe CMT symptoms as mild?

From a cursory internet search, it’s easy to find many articles that describe certain Charcot-Marie-Tooth (CMT) symptoms as mild. Some even refer to types of CMT that way. For years, I didn’t think too much about it. After all, I first started seeing these types of articles as…

Making a space accessible should involve more than a checklist

After a recent conversation with Bernadette Scarduzio, my friend and fellow Charcot-Marie-Tooth (CMT) advocate, regarding the inaccessibility of short-term rentals, I’ve been thinking a lot about accessibility. It’s a buzzword in the disability community, but for many, the concept is nebulous. This truth was highlighted by Scarduzio’s…

Fostering connections: It’s good for our health

Those of us with Charcot-Marie-Tooth disease (CMT) know it touches nearly every aspect of our lives. That’s true for anyone who is similarly disabled or has a chronic condition. For CMTers, the disease symptoms affect our mobility. Many of us have sleep apnea, which can lead to daytime…

Finding a new way to describe my experiences with CMT

Touch, taste, smell, hearing, and seeing: I don’t know if things are different these days, but when I was in elementary school, those were the five senses I learned from my teachers and textbooks. Until recently, I didn’t know there were others. But indeed, there are at least two other…