On My Own Two — Young Lee

I don’t know if it’s possible to live with Charcot-Marie-Tooth disease (CMT) without developing a long-term relationship with physical pain. Recognizing this, the Hereditary Neuropathy Foundation (HNF) provides a guide to common pain remedies called the “ABCs of CMT Pain Management.” I’ve been referencing this guide for…

I’m an Asian American with Charcot-Marie-Tooth disease (CMT). Of course, I’m more than this, but these two cherished identities of mine interact with each other, sometimes in profound ways. The way I experience life as an Asian American is altered due to my CMT, and vice versa. It’s a…

At my day job, I work in a midsized public library system, which I really enjoy. I help folks find books and other resources and work to make them feel more connected to their community. We don’t charge for our services because we believe in the philosophy that everyone deserves…

If being a man truly meant being as swift as a coursing river, with all the force of a great typhoon, with all the strength of a raging fire, all while being as mysterious as the dark side of the moon, every guy with Charcot-Marie-Tooth disease (CMT)…

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…