On My Own Two by Young Lee

light, being present, exercise, grandmother, wariness

Young is a writer with CMT 1A living in Cary, North Carolina. He graduated from NC State University in 2013 with degrees in economics and international studies. After working for a few years in finance, Lee decided to shift his attention toward writing and library studies. Although Lee first learned he had CMT at a very young age, he didn’t participate much in the CMT community until 2018, when his friend and fellow BioNews writer, Kevin Schaefer, encouraged him to explore and learn more about this very important aspect of his life.

Pain management with CMT is a lifelong journey of self-discovery

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…

How race and culture shape my disability experience

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…

We need more conversations about disability and employment

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…

How cold weather affects my hand strength with CMT

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…

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…