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Saturday, July 2, 2011

Welcome Jess Knowles to Team CMT

Jess is from Golden Colorado.  She is an accomplishe tri-athlete and runner. She is seen here holding just some of her medals.  Her wins include:
  • Run for the Resource Center- 5K 3rd in age group
  • Cross Country Super Loop Mountain Bike Race-17 mile course- 2nd place
  • Tri for the Cure-Sprint Triathlon-finish
  • Aspen Tri-finish
  • 24 hours of Adrenalin-24 hr mountain bike race as a relay
These accomplishments are even more impressive since Jess is one of six members on our team with CMT.  Jess 36 was dianosed at age 30.  She went to the doctor for migraines and came out with a diagnois of a disease she has never heard of.  The doctor took one look at her feet, did some sensory tests and sent her for gentic testing.    She has type 4c.  This was confirmed by the nerve conduction tests and EMG those of us with CMT remember so fondly.

Jess had no idea anything was wrong. She knew she fell alot, dropped things and had hand and leg cramps. She remembers hiking with her 14 month daughter in a backpack and having her ankle turn and falling. Her poor daughter hit her mouth and there was blood everywhere.  I am familar with falls on hikes, I catch my feet and turn an ankle at least once on a long hike. But I am the only one that has ever gotten hurt.

Unlike many of us with CMT Jess has always been athletic.  She has some of the other problems though, she is losing her hearing, and has problems with both wrists.  She has hands that get stuck in claw like mode often and sleeps with braces at night. She has had her foot straightened. She has had numerous problems with her feet that were made worse by some bad surgery.

 She once taught a spin class and has had to give it up.  She had to quit exercising for some time due to foot pain and being on crutches.  She tried swimming, but the cold water bothered her chronically cold hands and feet.

She saw an a  new surgeon who was able to correct some of her foot problems, so she is back to working out.  Her feet still have issues just like all of us with CMT. Her feet hurt in the morning and when she gets up she is stiff and walks like an 80 year old.  She has occasional leg cramps after exercise, but she isn't giving up. She is showing the same spirit common to all the athletes with this disease on Team CMT. Jess told me; "Life is a gift and I intend on living each day to the fullest." Jess says she has accomplished a lot in life and I have to agree. She will not let her CMT define her.

Jess is a registered dietician and has already contributed two articles to the Team CMT blog.  She plans to compete in her first half marathon this October.

Good luck to Jess as she trains for this run and other competitions. I am proud to have you wearing Team CMT colors. You look great and represent us well!




Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

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.

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