It’s September and that means one thing – CMT Awareness Month. During the month of September I will be using my blog to play a part in raising Awareness with an “alphabet challenge” – blogging a letter / key word almost every day. Today is brought to you by the letter F. I hope my month of blogging will help you to learn more about CMT – the most common but least well known hereditary nerve disorder. And I hope this will also help to raise funds for the Charcot Marie Tooth Association to support its efforts to find a treatment for CMT. You can join me in learning more about CMT by clicking onto www.cmtausa.org and of course a donation would be wonderful too!
This is similar to a post I originally made in March 2012 – but you really can’t talk about CMT without mentioning feet.
Feet are the most common and often first place that nerve disorders show up. It was a pain in my left foot after walking a midnight half marathon that led me to a shoe store who sent me to the doctor. It was at the doctor’s office back in 2004 that I realised I could not feel the pins they used to prick my toes, and that something indeed was wrong that shoes alone could not solve. My feet were the start of my diagnosis of CMT.
My sister and I took this shot while fooling around during a photo shoot – we were saying how we should take a picture of our crazy feet. We both have CMT, and have hypermobility, so our feet have high arches, and are a little more flexible than a “typical” foot.
Someone asked what the odds are that we would both have the same conditions.
1 in 2500 people have CMT
1 in 5 people have hypermobility
So each of us has a 1 in 12,500 chance of having both CMT and hypermobility.
And a 1 in 156,250,000 chance of both of us having both conditions, looking at stand alone statistics not considering genetics.
But when we consider the hereditary nature of both conditions…
CMT1A (our subtype) is an autosomal dominant gene, meaning only one parent needs to have it to pass it on, so we have a 1 in 2 chance of having CMT.
And although I am genetically ignorant about hypermobility syndrome, I believe that this too expressed itself through autosomal dominance in our family, so another 1 in 2 probability.
A 1 in 4 chance for us to have both conditions.
A 1 in 16 chance for both of us to have both conditions.
Societally rare, maybe, but all in the family, really! We don’t mind if you prefer to see us as unique.
Here’s to crazy feet, and a great photo taken by my amazingly talented sister – check her portrait work out if you are in South Florida!
It’s CMT Awareness Month. Today’s post was brought to you by the letter “F” – Feet, and Family. You can learn more about CMT and donate to support the search for a treatment for this at present incurable progressive degenerative nerve disease at http://www.cmtausa.org Thank. you!