Young Lee,  —

There’s no road map of what to expect with a disability or chronic condition such as my disease, Charcot-Marie-Tooth (CMT). Sure, I have typical symptoms to consider: weak hands and ankles, foot drop, fatigue, and chronic pain. But I have my own unique life with my disease, just…

It’s getting colder in my corner of the United States. I can feel it in my hands. For me, it’s not just the sensation of the chilly atmosphere nipping at my bare skin. My hand strength also seems to be drained after time spent in the cold. I’ve heard anecdotally…

A few weeks ago, I spoke with John Nixon, a bodybuilder with Charcot-Marie-Tooth disease (CMT), about his experiences in the sport. During our video chat, Nixon highlighted one key reason for his appreciation of fitness and bodybuilding: Unlike many things in our consumerist society, it’s not immediately attainable.

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…

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…

I remember the first time I saw the Zeen. A fellow Charcot-Marie-Tooth (CMT) patient had posted a video and some pictures of it on social media. From their posts, it was clear that this device was similar to scooters, wheelchairs, and rollators, yet I’d never seen a mobility…

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…

There are many things we in the Charcot-Marie-Tooth (CMT) community mourn. Among them are old passions, activities we used to love, and dreams we might’ve realized had CMT symptoms not gotten in the way. But in speaking with other CMTers, one unfulfilled desire I often hear about is…

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…

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…