Funny name…serious disease: so what’s wrong with you?

Parents need to make serious decisions about having children who in any likelihood will have any sort of disability, never mind have CMT. For a CMT person, the chance of having a child with CMT is 50 per cent.

Having a child with CMT means they will probably have a lower physical, psychological, and social well being than the general pediatric population. Moreover, the cost to families and society is high (likely special care, unemployment, discrimination etc) but the costs to children and adults with the disease is even higher (depression and discrimination among two common realities for anyone with a disability).

There are significant social debates yet to be had about genetic screening and about whole genome sequencing. We are rapidly reaching a point where scientists can tell things like whether you have CMT or not, but DNA microarrays or gene chips can also tell you what you are likely to die of and when. Some of us might want to know this, others won't.

There is no special color for CMT (like pink for breast cancer) or a product to buy (a bandaged bear or a daffodil) or a famous spokesperson (Michael J. Fox or Christopher Reeve) but they do have the Charcot-Marie-Tooth Association.

It is awareness month, so visit the CMTAA or Google 'Charcot-Marie-Tooth'.

Next time you are in a pub and somebody bumps into you don't assume that they are drunk. They may just have CMT.