OTHERS

Taking a Bite Out of Life with Charcot Marie Tooth Disease (CMT)

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Monica Thomas

Charcot Marie Tooth Disease (CMT)

I was diagnosed with Charcot Marie Tooth disease when I was 2 years old. Despite the terrible name, CMT does not affect teeth, but is named after the three doctors who discovered it. A hereditary muscular neuropathy, CMT was passed to me from my father, and several other family members have it as well, including my sister. 

I used leg braces to walk for most of my childhood and adolescence, but I have been in a wheelchair for the last decade or so. While some people may see wheelchairs as a kind of prison, my wheelchair is my freedom! I'm much more mobile now than I was before.

Going through my entire life with this disability has given me a unique and empathetic perspective. I know what it's like to sit on the sidelines, and I know what it's like to constantly have to fight for a seat at the table. I try my best to educate others about what it's like to be disabled, to open their eyes to a world that they may have not seen before. I don't believe in "overcoming" my disability or living just to be an inspiration to others, but in embracing CMT as a part of myself and living the best life I can, on my terms.

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