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Sunday, August 19, 2012

CMT and the Butterfly Effect

Team CMT member Caitlin Krueger
" I do not sing because I am happy, I am happy because I sing."- unknown

Have you ever heard the term "Butterfly effect?"
The phrase refers to the idea that a butterfly's wings might create tiny changes in the atmosphere that may ultimately alter the path of a tornado or delay, accelerate or even prevent the occurrence of a tornado in another location.

Andy Andrews in his book, "The Butterfly Effect" talks about how some simple acts have profoundly changed history. He contends the simplist acts you do can have great effect and meaning.

Well Team CMT member 100 caused her own butterfly effect.  I asked my niece Caitlin to be our 100th member because Team CMT would not be here without her. About 3 years ago Caitlin went to her foot doctor because she was falling and breaking bones in her feet.

Her doctor called in every favor he had to get her tested at Children's Hospital in Philadelphia.  Caitlin was genetically tested and confirmed as having CMT type 1a. If you saw her feet you would know right away.  When her mom emailed me about her CMT I was curious and did a google search on CMT. When I read the list of symptoms I knew I had CMT as well and got my own diagnosis in August of 2010.

I had never heard of CMT and it just did not seem right to me to have a disease that no one had ever heard of. I also knew I was really lucky to be still running, so I decided to use this gift to raise awareness of CMT. So a little over a two years after my own diagnosis we have over 100 members in 23 states, Canada and Iran.

When I think back on Caitlin as a baby and a little girl, I remember someone that was always smiling, laughing and talking. I can see why that foot doctor went the extra mile for her.   To her CMT is no big disease and she refuses to let it change her.  She turns 18 tomorrow and is off to study marine biology at college. She is obsessed with sharks. On a recent trip to Belize we took to celebrate her high school graduation she got to snorkel with sharks three times and try out scuba diving.
Caitlin may have CMT, but it does not have her. Even though she can't run or bike, she still has that same sunny and happy disposition. She refuses to think having CMT is a big deal.

So while running events, wearing team CMT gear and blogging may seem like small things, I am sure they are having a big effect. Who would have thought  when  Caitlin went to a ordinary doctor appointment it would lead to all of this.We are creating our own butterfly effect. I know our simple acts to raise awareness are going to make a huge difference. I can't wait to see what effects Team CMT has and it all started with Caitlin.

So next time you see a butterfly, think about Caitlin, all of us with CMT and how simple acts can have profound effects.

So Happy Birthday Caitlin, welcome to Team CMT. You've already made a difference with your life.  Good luck in college!

Chris Wodke
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

1 comment:

  1. Welcome to the team :). Every story counts and one day we will break through this 'unknown' wall and people will understand what our challenges mean :)

    We are the noisy butterflies :)