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Charcot marie tooth disease

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My partner and i live in Perth, Western Australia and my partners son is about 16yrs old and has Charcot marie tooth and we would love to beable to give him confidence if we could find a place that teaches teenagers how to cook or beable to learn how to be independant around the home. So we could all learn together and he wont be afraid of growing up... hope that makes sense....
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replied August 25th, 2009
hi, i am 49 and i also live in perth, i have cmt and have lived with symptoms since your sos age, sometimes it helps(it helped me) to speak with other cmters and see how they cope, i have had several surgeries to combat this disease and at times its not easy. i would love to reach out and encourage another with cmt if nothing else just to say its not all bad. feel free to write me.
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replied August 26th, 2009
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Good Morning Honey,I just saw this..Becasue you live in Australia you may want to doa PM to:timeisshort

He and his family also live in australia..The fammily is big in helping people..

My best friend in the states has this and she has a hard tme but still goes to work and uses a wheel chair most times now..She is a go getter and that helps..

I pray your son will keep the strength needed inside to push past everything else..This is a hard thing to happen but he can have a life outside of home..You are a wonderful and wise parent in helping to find someplace that can help teach him how to help himself..k
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replied September 14th, 2009
CMT
Hello, I'm Nastja, I live in Russia. I had CMT since four years, my left leg was fully rigid, my right leg had a little sensibility... I had different procedures, its was almost unhelpful, just a temporary result. Two monts ago I had met a doctor which really helped me. He works with me one monts, every day per 6-8 hours. And my left leg is mush better now, four toes are sensible, right leg fells almost as a normal. So, it is really a fantastic, I very grateful for him and I hope I will fully recove...
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replied April 8th, 2010
hi,

i live in perth australia and have a mild version of cmt diagnosed a few years ago. however it still gives me a lot of pain because my toes are clawing and i find it very difficult to get around at work. i don''t feel there is enough information available for people wiht cmt in perth, nor is there awareness of it.

i wish i could change that.
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replied April 8th, 2010
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Hi Avatar-maybe you could start a support group in Perth or even a page on line for people to go to..k
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replied April 13th, 2010
yes that is a good idea- how does one go about starting a support group? I guess a page online is a good start! thanks kd.
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replied April 13th, 2010
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Let your doctor know you want to begin a group session somewhere..Maybe hold meeting in your home and then take turns to location or the hospital might allow you a place in the cafeteria or coffee shop once a month..
Your doctor might have other patients that could be referred to your group or even know another MD who has patients..
Doing a page online would get automatic hits and it also would open doors to people all over..best of luck to you..
If there is anything I can do to help please PM..k
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Users who thank kdlee for this post: bellajay