[Vicki Pollyea is the CMTA Support and Action Group Facilitator in the Tampa Bay area.]
I recently became aware that many of my friends and acquaintances do not know what is "wrong" with me. They see me in a wheelchair but are too polite to ask why. I decided to write about the "Condition No One Has Ever Heard Of — Charcot-Marie-Tooth." Yes I know, funny name, but it is a very serious condition. It is named for the three doctors who identified the condition in the 1870s. So CMT has been around for a long time.
CMT is the most commonly inherited neurological condition. Worldwide, 2.6 million people have CMT. That's about 1 out of 2,500. In the United States that amounts to more than 125,000 with CMT. It is nearly as prevalent as multiple sclerosis. But CMT is not as well known as MS, and I'd like to see that change! Turns out, the father-in-law of the director of the National Institutes of Health has CMT. Who knows, you may know someone besides myself who has it. In the Tampa-St. Petersburg area, we have identified more than 300 individuals with CMT and know there are many more we have not reached. I am the leader of the local CMT Support Group, which meets four times a year.
CMT is an inherited neurological condition that initially causes damage to the distal peripheral nerves — feet and then hands, and slowly causes problems in the legs, arms and other areas. The actual disease process involves a demyelinization of the peripheral nerves, which control sensory information and muscle function. Although CMT does not usually affect life expectancy, it can cause significant disability. The degree of involvement can vary greatly in severity, even within the same family.
Scientists at the National Institutes of Health are working with medical professionals around the country, and an international consortium of researchers has made tremendous gains in understanding the disease pathways. They are actually using the word "cure" and are working to find treatments to stop the progression of the disease.
I am an unusual case in that my sister, mother and I were diagnosed when my sister and I were young. Although trained as an occupational therapist, due to complications from orthopedic surgeries and progression of the CMT, I had to go on disability. While I can walk with great effort, I utilize a power wheelchair to get me out in the world. Thankfully, I am still able to not only lead the support group but also serve as president of my neighborhood association (Bayshore Gardens) and try to remain active in my community.
Considering both the high incidence and that we are a condition no one has heard of, the week of Sept. 19-25 is the first National CMT Awareness Week. I am trying to reach out to spread the word about what CMT is and the exciting research news. Of course the goal is for a "World Without CMT" but first we have to make the world aware of CMT! Perhaps with this grass roots campaign we can change peoples' awareness of what CMT is.
To learn more, please visit the website wearethecmta.com. If you look closely, you will find two pictures of yours truly — one with my lovely sister, the other with a nice snook. There is a great video, links to more information and, of course, a way to make a donation.
Hopefully in the future when you hear CMT, you will not think only of Country Music Television!