Elliot is a young boy with CMT who has posted a U-Tube video called Elliot's feet.
As I watch his video I recognize my own feet. I see his feet mirrored many times in my family. Two of my nieces share this disease. One is 20 and wears braces. As I watch the video I wonder why I am so blessed. Why can I run while many others with this disease wear braces? Why can I run marathons when so many others struggle to do everyday tasks like open jars, stand, and button buttons. I never asked why me, why do I have CMT. I asked what God wanted me to do with it. I feel so lucky to be able to raise money and awareness for CMT.
Why has no one ever heard of this disease when it affects 150,000 Americans? Why have many medical professionals never heard of this disease? Everyone has heard of MS, Spina Bifida and Cystic Fibrosis. Just as many people are affected by CMT.
CMT slowly steals the ablility of those who have it to walk and do other every days tasks most everyone else takes for granted. CMT will slowly take away my ability to run. I am reminded of that everytime my foot catches when I run and everytime I fall. I don't know how fast my disease will profess or what I will lose. My family seems to have a very mild form. Not everyone is as lucky.
That is why like Elliot I have dedicated my running to raising awareness of CMT. I founded Team CMT to make others aware of this disease and those of us living with CMT. We are so close to a cure. The gene that causes CMT has been identified. Several hundred componds have been identified that may help. It is estimated we may be 3-5 years from a cure. There is also hope that someday we may even be able to reverse the effects of the disease. I hope so for Elliot, my family and everyone living with CMT.
Founder & Manager Team CMT
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.
CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.
Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.
Structural foot deformities such as high arches and hammer toes are common.
Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.
Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.