"You have to know what sparks the light in you so that you, in your own way can illumiate the world. " - Oprah Winfrey
Most people with CMT have never met someone outside of their immediate family that has CMT. It is considered a rare disease with about 160,000 Americans affected. That amounts to about 1 in 2500 people.
I remember two visually impaired athletes at race camp I atttended in Breckenridge this December. There were intense conversaton at lunch one day. One of them, Barbara turned to me and apologized. She went onto to say she and the other athlete were "talking shop". What she meant was they were talking about their shared experience of being visually impaired.
For many of us it's the same with CMT. When you meet someone you know they just get what it means to have CMT. You talk about what type you have, who in your family is affected, the symptoms you have and when they started.
So many people in the community want their friends and family to understand what it means to live with this condition. You don't have to explain that to another person with CMT. Even with a disease like CMT with a variety of symptoms, their is always shared experience. That experience often includes the struggle to get a diagnosis.
Having sysmptions but no name for your condition can be isolating. I found I often had to cancel plans with firneds due to fatigue. Not being able to explain why was even more isolating.
Having a name to my condition gave me a place to belong. I now had a tribe that understands exactly what I am going through.
Team CMT helps provide a shared experience for those of us that are athletes and living with CMT. We can share the trials and joys of being active and racing. We understand that CMT steals a bit of our ability every day.
Not only do we have a shared experience but shared passion. Being an athlete with CMT is even more rare. For a long time I thought I might be the only person with CMT that runs,bikes, swims or competes. I was even told by the Charcot-Marie-Tooth Assoication that they only knew of one other athlete with CMT.
We now have over 200 people that have joined Team CMT. Our purpose is to particpate in races to raise awaeness of CMT and funds for CMT research. More important, they are my tribe and my family. We have dozens of atthletes with CMT from all over the world.
Some have finished Ironman triathlons and marathlons, others due a variety of exercises from kayaking to martial arts to stay strong and retain function. At a time when many people still did not talk about CMT, they stepped forward to claim their CMT and wear a Team CMT uniform. I am so grateful for their dedication to our cause and their courage.
Many of our members are friends and family members of those of us with CMT. Being on the team gives them a chance to help. I am so grateful for their love and support.
All of this is possible because of the diagnosis each of us have gotten. With it we have found our place. Each of us now has a chance to make a difference and to change our small part of the world.
Doctors should never minimize this condition or fail to tell a patient the name of their condition. To do so deprives them of their place in the world and their chance to contibute.
*****************************
Chris
Wodke
Founder
& Manager Team CMT
www.run4cmt.com
Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished
2nd at Boston
in the Mobility Impaired Division. She was on the course in 2013 when the bombs
exploded.
She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.
In 2014 she was the PC Open Champion at the Duathlon National Championship and at the Aqua bike National Championship in 2016. She represented TeamUSA at the Aquathon ITU World Championship in Chicago in 2015i, Cozumel
in 2016 and Denmark in 2018. In 2018 finishing 5th in the 60 to 64
age group.
In 2014 she was the PC Open Champion at the Duathlon National Championship and at the Aqua bike National Championship in 2016. She represented Team
In 2014 she represented the U.S. as a paratriathlete at the Pan-American
Triathlon Championship in Dallas ,
Texas USA
for the World Championship.
In 2020
she was named a National Ski Patrol Subaru Ambassador and a USA Triathlon
Foundation Ambassador.
She
travels around the country raising awareness of CMT.
She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete and the book “Soup Sundays, A Journey Toward Healthy
Eating”.
Team CMT
is a group of athletes and supporters working to raise awareness and to find a
cure for CMTWe currently have 233 athletes in 41 states. We also have
members in Australia, Canada, England, Finland, Vietnam, Iran, Scotland,
France, Turkey, Poland, Norway, Mexico, Wales, Ireland and Sweden!. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org
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.
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