CMT and Me
— Jill Price

Jill was diagnosed with CMT 1A at the age of 2. She is a fourth-grade teacher and mom to a teenage son, who also has CMT. Jill loves photography, travel, and spending time with family and friends. She researches and writes tips that make life with disability a little easier.
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Tips for Photography Enthusiasts with Disabilities

Recently, I joined a photography group for moms, and with them, I’ve been learning new techniques to feed my passion. However, there are times that I find these techniques difficult due to Charcot-Marie-Tooth (CMT). My hands sometimes shake which makes the photo blurry, or I hit the shutter too soon…

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Navigating the Confusing Information Online Regarding Supplements

There is so much conflicting research online about supplements that can help relieve the symptoms of Charcot-Marie-Tooth disease (CMT). How do I know which is valid and which is just hype? I have even asked my doctor, but he is not confident enough in this…

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The Thoughts that Keep Me Up at Night

What keeps you up at night? For me, it’s recently been the idea of “run, hide, fight,” which is survival advice for when there is an active shooter. Those are scary words for someone with a disability. My disability may be “invisible,” but I won’t be invisible to a…

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Taking Big Steps in My CMT Journey

“Those who have known you for years love you for what is between your ears, not what is on your ankles.” A dear friend said that to me the day I was fitted for my first pair of ankle-foot orthosis (AFO) braces. I was, and still am, feeling very conflicted…

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My CMT Symptoms Can Get in the Way of Fun

Do I want to go hiking with you? Yes. But the bigger question is, “Can I?” Will the path be steep? Is it narrow? Is it rocky? You see, these things scare me and make it difficult for me to attempt to hike, even if I truly want to join…

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Exhausting My Options for Battling Fatigue

The other day, I went on a field trip with my fourth-grade class to the Library of Congress in Washington, D.C. We had to do a fair amount of walking from where the bus dropped us off, then we toured the building. When we returned to school, my…