Wednesday, September 21, 2011
Welcome the Weatherfords to Team CMT
Welcome to Kentucky Team CMT members Shirley, Cody and Rick Weatherford. They aren't athletes yet, but when they heard about Team CMT they wanted to wear tee shirts to support our effort. They don't have a support group in their area and do not know anyone outside of their family with CMT.
Shirely shared with me when a family member has this disease and know one has heard of it or knows what it is, it makes it that much harder for the family.
Cody is 18 and has been told he has CMT. They don't know which type since their insurance will not pay for genetic testing. Cody was diagnosed when he went to Shriners hospital after a year of unsuccessful treatment for scoliosis. Scoliosis is common in CMT patients. In middle school Cody had a growth spurt and starting showing signs of clumsniess and complained of pain. They thought it was just growing pains. Those signs all fit together now that he has been diagnosed. Some days are good other days he can be exhausted without doing much of anything. This makes school tough for him.
He got his first pair of braces this year and is now taking medication for his pain.
This story is very familar to all of who have CMT or have family members affected by the disease. One of the great things about Team CMT has been creating a community. Most of us with CMT have never met anyone outside of their family with this disease. We now have a community of 45 members all working to raise awareness. We can't do anything about this disease, but we can give it a face and a name. No one should have to suffer the indignity of having a disease that no one has heard of, especially when it affects 155,000 Americans. Thanks to the Weatherfords for their efforts and welcome to Team 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.
Running, triathlons, impaired athlete, paratriathlon, USAT, running and CMT