Can-Do-Ability: Answers and Solutions from my personal experiences of living with a disability

My disability is common but most people have never heard of it

15 Dec 2015I have Charcot-Marie-Tooth Disease (CMT). Now I imagine most of you just thought,
What's that? or I've never heard of it?

I'll start with what throws people off when they see the word tooth. Contrary to the name it has nothing to do with my teeth. The name instead comes from the three doctors that discovered the disease.

CMT affects the peripheral nerves in my body. These are the nerves that send impulses back and forth between the muscles, the spinal cord, and the brain. To put it simply they're what tell your muscles to move when you want to use different parts of your body.

Someone with CMT has abnormalities in their peripheral nerves, so the impulses sent either slow down or don't reach the destination. This gives us slow, if any reflexes and eventually leads to atrophy of the muscles in the hands, arms, legs, and feet.

The way I've learned to adapt is to try and anticipate a situation and react before it happens, with varying degrees of success.

A short list of the common characteristics of CMT:
  • High foot arches and hammertoes or Very flat feet.

  • A high-stepping walk.

  • Fatigue.

  • Muscle weakness in Hands, Arms, Feet, Legs.

  • Poor balance, coordination, and reflexes.

  • Prone to tripping or falling.

  • Difficulty completing simple tasks with your hands - gripping things, doing up buttons, pulling up zippers, turning door knobs, etc.

  • Reduced ability to feel things in the hands and feet - pain, temperature, etc.

  • A burning sensation in the hands and feet. I'd describe it like the stinging pain you get from a sun burn.

If you want to find out more information on the causes of CMT, how it's diagnosed, the symptoms, or how I deal with the challenges it gives me. Feel free to ask me in the comments section below or visit these links.

Charcot Marie Tooth Association Australia
Charcot Marie Tooth Association US

I'm not surprised when someone gives me a blank look when I tell them I have CMT. In my experience even the doctors I've spoken to didn't know what I was talking about unless they were a specialist in a related field. When all else fails I normally just tell people it has similarities to muscular dystrophy and they usually get the idea.

I feel that it should be more surprising though. It's one of the most common inherited neurological diseases affecting 1 in 2,500 people, so you'd think there would be greater awareness out there.

I think the lack of awareness can be attributed to the invisible or misdiagnosed nature of CMT.

As a child even my own parents thought I just walked slowly, was clumsy, and wasn't strong. As an adult when people notice my hands or legs, they assume it's something else. I once had a women ask me how I hurt my leg when she noticed me walking differently; she looked rather confused when I told her I hadn't hurt it. I've also met people who were 60+ that had only recently found out they had CMT. They had mild symptoms all there life, but they thought they were caused by something else.

When there are people with CMT who aren't even aware they have it, it's no surprise that your average person isn't aware of it either.

So this is my effort to help spread awareness and hopefully now you know more about Charcot Marie Tooth disease than when you started reading this article.

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