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Charcot-Marie-Tooth disease is the commonest form of genetic neuropathy.
It affects both the nerves for movement:
the motor nerves and the nerves for feeling, the sensory nerves,
which is why it's called motor and sensory neuropathy.
And the word "hereditary" means it's genetic, or inherited.
There are about different 40 genes that cause the disease, so it's complex.
But most people have more problems with the motor nerves than the sensory.
The nervous system can be divided into two parts.
The central nervous system is the brain and spinal cord,
and the peripheral nervous system is the arm and leg nerves.
So that means it's what we call length-dependent,
so your longest nerves tend to be affected first.
The longest nerve in your body is the one from your back to your toes.
So most people present with problems in their feet.
And then slowly that moves up their legs,
and when it hits about the knees, the hands become involved,
and that slowly moves up. And by slowly, I mean decades.
As you grow, your bones develop as your muscles develop.
The nerves to the muscles don't work properly in this disease.
The muscles are normal initially,
but the nerve supply is what makes your muscles work.
So it's an electrical supply to your muscle to make it work.
If that's not working, which is the case in Charcot-Marie-Tooth disease,
eventually the muscles waste away, and once they're wasted, they cannot work.
There's two big types of Charcot-Marie-Tooth,
Type 1 and Type 2.
And that's because all the nerves in your body, wherever they are,
have a central bit of the nerve, called the axon,
and that central bit, if you think of it like an electrical wire,
is surrounded by this fatty insulating material, myelin.
So the message goes down the centre of the nerve,
but the speed of the message is determined by the coating.
Most people require someone to examine them
to find the weakness in the arms and legs or the lack of feeling.
A neurological examination.
It's incurable, in that there isn't a treatment to make it completely better.
Most people that don't have the serious types have a normal life span,
and correct management is very important.
And lifestyle management,
doing the correct career for them in terms of managing fatigue and pain.
Even though most careers are open to people with CMT,
careers that need fine movement of hands and feet are not a good option.
Later on in life, you know, 30s, maybe 40s, 50s,
they may find standing is very difficult for a day.
And as they get slightly weaker feet, walking is easier than standing.
Standing requires a huge amount of balance.
The vast majority of people will need an aid to walk with in time,
be it a splint or a walking stick.
Very few of the common type need wheelchairs.
So it's minor things when you see each of them individually.
Cumulatively it's quite a lot.
The best advice is to try and see someone who understands the disease.
Be sure they access appropriate care, occupational therapy, physio, etc.
And not be put off by being told there is no treatment,
that you don't need to see a specialist.
Even though it's incurable and it is manageable,
it has to be managed to be manageable.