Discussions By Condition: Medical Stories

Charcot marie tooth

Posted In: Medical Stories 0 Replies
  • Posted By: moonbubble
  • May 18, 2011
  • 08:32 PM

My daughter is 10 she has CMT type, My daughter comes from a family of CMT suffers who are significantly effected , 2 members of the family have suffered leg amputations she has significant muscle wastage , mobility difficulties , significant and rapid progression , ankle and foot problems /calluses,ankle weakness, bone deformity , she has hip problems and scoliosis , she will need a number of operations she uses a number of aids to assist her with day to day tasks for more info about My daughters condition visit www.thegeorgiaallenfund.com.
My Daughter uses leg braces , wheelchair , special trike because she cant ride standard bike , We do regular physio,low impact exercise/stretching and it helps massively , so do treatments like massage , heat therapy , exercise equipment following a daily physio and exercise program is hard but has worked for us , other therapies explored , plenty of swimming and expert bracing and orthotics ,the benefits of modern bracing techniques and materials must be explored, We have had amazing results bracing is prolonging the need for major surgery
We have many medical appointments with a complex team of therapists , we have lost count of the many many times we have had to educate therapists who have never heard of CMT let alone treated CMT , Schools need a better understanding of how children can be effected
We run support and contact groups for people living with CMT , Awareness is extremely important to us please visit The Georgia Allen Fund For Charcot Marie Tooth www.thegeorgiaallenfund.com for latest news and events

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