Charcot Marie Tooth (CMT) disease is something that people really don’t understand. Growing up I didn’t understand it either, but I am here to explain to you what it is and to show you My Life with CMT. You can read about MY AFOs and Orthotics if you are curious about them.
What is CMT?
Charcot Marie Tooth (CMT) syndrome is more than just a slowly progressive disease that affects peripheral nerves and muscles in the extremities. It can cause damage to the entirety of the body ecosystem – heart, lungs, diaphragm, swallowing, choking, digestion, vocal cords, urogenital areas and joints. While the majority of people with CMT live long relatively healthy lives, it can cause early death if not correctly diagnosed and symptoms managed. With 50 subtypes now identified, treatment possibilities are beginning to show great promise in pleodrugs, stem cells and gene therapy. There is much hope and a brighter future ahead for all those who are affected.
This month of September 2012 begins a year long aggressive awareness campaign for public health recognition, targeting medical professionals and their patients who may have been mis-diagnosed, or are completely unaware they carry the genetic inheritance. CMT can be so mild, it presents as “invisible”. A wonderful symbol of how we are all different is the peacock…(we are all one bird, there are many feathers – types and symptoms)
On the other hand, it can be so severe that muscle atrophy causes major mobility and sensory deficits requiring assistive devices such as AFOs (Ankle Foot Orthotics – leg braces), scooters, adapted vehicles, computer accessibility (voice recognition), ergonomic kitchen tools, and re-designed living environments.
As one of the many neuromuscular disorders, it can be confused with Multiple Sclerosis or Muscular Dystrophy. This year’s CMTUS awareness efforts objectives also include differentiation between these and CMT. (Courtesy of CMTUS.)
There has always been a list of medications and things that are harmful for people with CMT. This list and information can be found on my Medication Don’ts post. They had alcohol on the list for most of my childhood and they finally took it off when I was in high school. I think the reasoning behind why to avoid alcohol is apparent for the same reasons of your average person.
Please stop on by and follow for the whole month of September as I teach even more about CMT and interview some successful persons with CMT! At the end of the month we are going to have a huge “Celebrating Our Abilities Giveaway!”
Finally if you would like a Free Info Kit you can get one at CMTAUSA.org but need to make a free account first!