I was about seven when anyone first noticed there was something up with me. My feet looked really twisted, my big toe was wrapped over to the middle of my foot and my others toes squashed underneath. None of them pointed straight ahead, some of them were crumpled up, with the tops of them pointing down towards the floor. They were very painful and walking was very difficult, I used to fall a lot. I still fall a lot today.
I saw many doctors as a child, none of them seemed to know what to do. My parents took me to Lilly & Skinner in Oxford St. to get shoes made to measure for me but I hated them. They only had two styles designed to work for boys and girls. Both were dull and boring. No-one made any concessions for me at school for sports so I struggled and got bullied because of it. I could hardly believe it thirty years later when my son was also bullied for the same thing by a sports teacher, despite his medical history being written on his school notes! The teacher rang me and said James was struggling with the physical activities. The teacher had spoken to James and ‘he said he’s got a condition, something that makes him less strong- that’s not true is it.’ I promptly told him that indeed it was and it had been on his notes since he’d started at that school. The teacher apologised and James was allowed to do golf, which suited him better.
In my twenties I had lots of surgery on my feet to make them straighter, but although I asked doctors what was wrong with my they said they didn’t know. The surgery did help, but my feet still weren’t good, they were still painful and I still fell a lot. I asked various doctors what the trouble was and they didn’t know. Then one summer’s day I was hanging the washing out and my hands just couldn’t work the clothes pegs. So I went to a new GP, fortunately I’d just moved and my new GP was much better. He didn’t know what could be causing my difficulties but he flicked through my notes and found a comment from an orthopedic surgeon, saying that he thought it was a condition called Charcot Marie Tooth disease.
It’s basically an electrical fault, nerve messages don’t go through the nerves properly because the outer coating of the nerve (the myelin) is faulty. For an unknown reason it affects the long nerves to the hands and feet, so you lose control of them and get a lot of pain. The nerves to my hands are weak and it makes the muscles on my hands have just withered away. It makes my feet twist up, so although the problem is with the nerves, it’s often an orthopedic surgeon who can help put the twisted toes into a better place. I find the surgery excellent, it doesn’t mean my feet are perfect, but it certainly helps. My new consultant says he reckons there are more symptoms that are as yet unexplained scientifically but are attributable to CMT. I have been having some problems with my vision in the last few years, part of my vision becomes blurred, and he reckons that is CMT. I guess science will prove it in time.
Read more about CMT below