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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…

Is There a Lighthearted Way to Talk About CMT?

How do those of us with Charcot-Marie-Tooth disease (CMT) communicate how it affects us and explain what it’s like to be a CMTer? As someone who has fairly mild CMT symptoms, I’ve described the disease as a kind of genetic clumsiness. However, I always knew that never…

Learning to Appreciate My Body Rather Than Resent It

I want to love my body, but that’s not always easy to do. Charcot-Marie-Tooth (CMT) disease has physically changed me. Sometimes it’s hard not to feel wistful when I imagine what life would be like if my body were completely different. In my darkest moods, I might even…