Many of us find out we have Charcot-Marie-Tooth disease after a child or relative has been diagnosed, or are diagnosed when we go to a doctor for something else. Although many doctors do not know CMT as such, they do know that something is wrong when they see the thin legs, high arches and footdrop connected to a slapping walk. From that inkling that something is wrong, we are usually sent to a neurologist who takes a family history and then does an electromyogram (EMG) and/or suggests blood tests which are available for several of the many types of CMT.

Because there isn't information in every doctor's office about CMT and because s/he may have studied it for an hour along with 40 or 50 other neurological disorders, he won't be able to sit down with you and tell you about it. And, this may be a good thing.

The word "progressive" can, indeed, by very frightening. How progressive is usually the question asked but it is a question that cannot be easily answered because we are all different and our CMT is different as it affects us as individuals. One person might only have high arches and never go beyond that while another might begin with high arches, develop cocked toes, sprain an ankle often, develop footdrop, notice atrophy in the hands and even develop breathing difficulties. There is no real set pattern for CMT, and people whom doctors have told would be in a wheelchair continue to walk or play the piano, and those whom you might think would carry on suddenly find themselves bad enough to want to retire.

Research is constantly telling us all kinds of things about CMT, and the fact that thousands of people with CMT have come forward to be part of organizations around the world working with CMT means that we have first-hand knowledge about our disorder, usually more than most doctors.

Beware of any doctor who tells you that you will be in a wheelchair within two years or that you won't be able to work. He has no way of knowing these things and our readers have told us time and time again that their CMT has changed their lives, yes, but sometimes it is for the better. In most cases it teaches us to be kinder and gentler to ourselves, not to push so hard, and to watch for things we are doing to ourselves to make our CMT worse…things like pushing ourselves to exercise, to work long hours when we are exhausted, to continue in a stressful relationship. We've learned that we last longer if we truly learn to look after ourselves. We can do this by reading everything we can on CMT.

We want you to be able to think straight after your diagnosis and cope as well as possible with your CMT and the CMT that could be in your family.