Linda: Reading through your article on CMT and looking at the drawing of the symptoms, it was like looking at my own body! I was born with club feet and curled up toes. When I was 17 years old, the surgeons decided to cut open the whole length of both legs at the back. They never told me what for (you were not allowed to ask questions in those days). I suppose they severed some tendons, then they opened up both ankles to rearrange the bones, and lastly sliced across the bottom of the toes on both feet in the hope of straightening the toes out. About 15 per cent of my legs were changed, my feet were a bit flatter, but my toes still curl and my ankles are still swollen. I trip an awful lot.

A few years later, they decided to do something about my hands as I had no muscles at all below my thumbs and my fingers were like claws. They broke my fingers but they didn't set properly, and then they took a muscle from the third finger of my right hand, opened up my wrist and inserted the muscle down through the hand into the wrist and onto the non-existent muscles of my right hand. That didn't work either!

When I was in my 20s, I suffered dreadfully with pains in my spine. I underwent an operation where they put me under, removed most of the tissue in the backbone and filled it up with some sort of 'goo.' They still won't tell me what they did. (The surgeon is dead now anyway. I might be able to catch him without his wings one day and de-pluck him if he doesn't tell me what happened!)

Through all this, I managed to have a very unsatisfactory marriage, two beautiful children who unfortunately don't want anything to do with a disabled mother (too embarrassing), but I found a wonderful husband without whom I would have ended my life years ago.

Your diagram (in CMT and Wellness brochure, showing the various areas that can be affected by CMT) helped me wonderfully because what I thought were heart attacks were muscle spasms. My voice is very weak and I suffer eating; food gets stuck in my throat. When I go to bed at night, after an hour or so of sleep, I wake up with a very dry throat and have to take sips of water to lubricate. This happens four or five times a night. It seems (according to the hospital machines) when I do manage to sleep, my breathing gets so shallow. It's a good job my throat gets dry; nature has to wake me up.

The latest thing that is happening to me is I am getting what the doctors call "frozen shoulders," a painful complaint, where it is impossible to lift your arms above your head or pick up anything heavy.

I know this is a dreary letter to be writing to you but perhaps other people have had the same symptoms. When I was a child and growing up, apart from the usual chicken pox, measles, etc., I also had yellow jaundice, scarlet fever, epilepsy, and now that I am grown up a "BAD TEMPER"!

Thank you for your time in reading this letter. If the enclosed poem is any good, it is yours to do with what you want.
Linda here - Ann sounds like she needs some TLC and a good ego boost. Let's hear it for her for having the heart to share her most private thoughts with all CMT women.

LONGING
by A. F., England
This isn't loving, this isn't life,
How can my Hubby say he has a wife
'THO I'M A WOMAN

The nights are the worst, in the darkness of night,
You long to touch him, to hold him so tight,
'COS I'M A WOMAN

When your mind's full of loving, but your body's in pain,
But you know you can't touch him, it will all be in vain.
'COS I'M A WOMAN

Your body cries out to be cuddled and kissed,
To hear sweet whispered nothings of the things that we've missed.
'COS I'M A WOMAN

I'm crying while typing, I'm aching for love
Am I asking too much, I ask the heavens above
'COS I'M A WOMAN

No shame do I feel for making you see
The passionate loving that's being denied me
'COS I'M A WOMAN

Although this disease is sad and inhuman
Remember, oh please, DEAR GOD
THAT I'M A WOMAN