On My Own Two — Young Lee

Many of us with Charcot-Marie-Tooth disease (CMT) have struggled to find medical professionals adept at working with patients like us. A good, productive patient-provider relationship requires effective communication, understanding, trust, and appropriate investment from all parties. Considering that recently, I had a revelation: This kind of dynamic also…

To help clients improve balance and proprioception, or our ability to perceive our bodies in space, many personal trainers suggest starting with basic exercises and slowly working up to more challenging ones. One of the most rudimentary and approachable exercises, for some, is balancing on one leg. Many of…

Those of us with Charcot-Marie-Tooth disease (CMT) know that it takes things from us in profound ways. For example, it chips away at our balance and leads to muscle atrophy. Because CMT symptoms often manifest in unpredictable ways, we can’t effectively plan for our future. As a result, many of…

I’ve often looked to my father as an example. That’s been true in many contexts, but it also includes his living well as a person with Charcot-Marie-Tooth (CMT) disease. From a young age, I’ve known that both my father and I have CMT. Throughout my childhood, I was…

Like many, I’ve enjoyed watching incredible athletes showcase their abilities at this year’s Paris Olympics and Paralympics. The Olympic Games always remind me of all the forms athleticism can take. There are countless sports out there that are all recognized as valid and worthy endeavors on a global stage.

Sometimes it feels like some of us live in separate worlds with different rules and dynamics. I’ve noticed this while chatting with friends, co-workers, and even strangers about Charcot-Marie-Tooth disease (CMT), my symptoms, and what it’s like living in a society not quite optimized for people with disabilities.

A few weeks ago I saw my primary care physician for a routine physical exam, the first I’ve had in person since the height of the COVID-19 pandemic. I updated him on significant life events and asked a few general questions about my Charcot-Marie-Tooth (CMT) symptoms as well…

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…