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article imageLiving with a muscle-wasting disease Special

By Jane Fazackarley     Feb 26, 2013 in Health
There is a little heard of neurological disease that blights the lives of many people. Despite the fact that 2.6 million people have the disease, it does not get the publicity it should. The disease is called Charcot Marie Tooth (CMT).
I was first diagnosed with it when I was 15-years-old. Looking back, I can now see that I had the symptoms all along. All through school I’d notice my muscles were weaker than others and that I couldn’t do things that other people could. I had – and still have – curled toes, which is one of the symptoms of the disease and wasted muscles in my legs.
A picture of a foot damaged by CMT.
A picture of a foot damaged by CMT.
When I was thirteen I developed problems with my hands and found it difficult to grip a pen or do simple things that other people might take for granted, from there the symptoms got worse.
CMT, which is also known as Hereditary Motor Sensory Neuropathy, causes many symptoms such as muscle weakness, fatigue, muscle wasting and problems with balance. For some people even doing a button up or tying a shoe lace can become a major task due to the muscle wasting and the loss of dexterity the disease causes. For some people like myself, walking feels like a real chore when I am struggling for every step I take.
Damage to the foot caused by CMT.
Damage to the foot caused by CMT.
However, anyone newly diagnosed with CMT and might be reading this should be aware that the symptoms of the disease vary from person to person and they might not ever experience some of the problems that others do, and some people show few symptoms at all. It’s an unpredictable disease and that’s the part that scares me the most.
It wasn’t until ten years ago that I started to learn as much as I could about CMT. I’d always been too scared to read about it in the past as I was frightened of what I might learn, however, I have found that knowledge is indeed power and the more I understand the disease the easier it is to live with.
As yet there is no cure for the disease, and there is little in the way of effective treatments for the symptoms, but there is hope in the form of the many non-profits out there such as the Hereditary Neuropathy Foundation and the vital research they carry out could one day lead to a cure.
More about charcot marie tooth, Muscle wasting, hereditary neuropathy, hereditary neuropathy foundation
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