|My dad is the handsome guy at the head of the table.|
" You can't always choose the path you walk in life, you can choose how you walk it." - John O'Leary
On a early July afternoon in the late fifties I entered the world with a number of genetic gifts courtesy of mom and dad. Fathers day on Sunday made me think of the legacy of some of those gifts.
I can blame my being vertically challenged on both of them. My family is riddled with tiny woman on both sides of the family. When I met two of my mom's aunts, I remember I at 5'2 could see the tops of both of their heads when we were standig standing. There is a family story about one of my great grandmothers getting up on a stool to argue with her husband because she was so short.
From my Dad I got my analytical ability, asthma and his CMT. It 's only fair since he got those same gifts from his Dad, who got them from one of his parents. I had a 50/50 chance of getting CMT. I share CMT with his sister, my sister and two nieces. Because my family has a mild case, I suspect at least two of my brothers have undiagnosed CMT.
We've all had classic CMT symptoms all our lives. Rolling ankles, sprains, clumsiness, aches, fatigue, being cold and poor handwriting were parts of our everyday life. For me as an athlete I had tight calves and was always prone to injury. I was a puzzle to physical therapists. I did not have enough flexibility to walk correctly much less run.
My dad built a first floor bedroom when he retired at 60 because he had no feeling in his feet and could no longer climb stairs. His doctor told him he had a genetic nerve disorder, but don't worry about what it is called.
Well when my nieces were diagnosed with genetic testing 3 years ago we finally knew the name. We had Charcot-Marie-Tooth. I got my own diagnosis in August of 2010. It didn't seem right to me that no one has ever heard of CMT even though 156,000 Americans it. That is as many people as MS.
That didn't seem right to me. I also knew that my families form of CMT was pretty mild. I was still able to run, so I decided I had to do something.
You see one of the gifts I got from my mom was crazy determination and stubbornness. I prefer to call it being firm minded. I am especially determined when I feel I am righting a wrong. No one should have to have a disease that causes you to slowly lose use of your hands and legs and have someone stare at you when you tell them the name. It's like being victiminzed twice, first by the condition and then from lack of recognition and understanding.
So I have been very open about having CMT. The funny thing is my family barely talks about CMT and I can't seem to shut up about it. My obsessive nature about any cause I get involved in is another one of those genetic gifts. That experience is not that unusual. Most families don't talk about the CMT in their midst and in some cases are not all that supportive. When I did my first fundraiser, my dad did not want to even contribute. He told me any treatment or cure would be too late for him.
Team CMT was created to raise awareness and connect athletes with CMT and their families. I hope we will change public awareness about CMT and create a sense of community of CMT affected athletes. Instead of being sad or angry or quiet about my condition I have chosen to take the most public route possible.
So far Team CMT has 94 athletes and supporters. I know we are changing attitudes about CMT and exercise. We have many active athletes with CMT and we are inspiring others in the community to be active as well. I hope that is the legacy Team CMT leaves.
Founder & Manager Team CMT
Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.