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CMT-Support · CMT- Friends and Support

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Description

Charcot-Marie-Tooth Disease (CMT) is the most common Hereditary Neuromuscular Disease known. It is also known as "Hereditary Motor-Sensory Neuropathy" (HMSN). About one in 2500 people or 2,551,875 people have one of many different forms of CMT world wide.

In this group, we share our feelings as well as life's ups and downs. The latest research, mutual support of people with CMT, their friends, families and medical professionals.

We share good days and the bad as well. If you are dealing with CMT in your life in some way, then it is our hope that you will join our group of caring-sharing people.

Our founder stated: "I may have started this group, but it is a group of and for the members."

Sadly Lamar Stephenson RNC, our founder- passed away 01-10-04. His hopes - dreams were to educate those with CMT and the public about it, to support research in finding a cure and/or better treatments for us all. To also help insure that future generations will not have to suffer with this disease, as we have. We strive to continue his dreams, here at CMT-Support.

Prior to losing Lamar, we also lost two dear friends of the CMT Community, our moderator, Kathleen 'Kat' Lopp Smith in Sept of 2003 and Roslyn 'Roz' Levenstein who at the age of 81, was author of our motto, Get Up-Get Dressed-Get Out. On 3/19/08 we lost Our Dear friend and Moderator, Alice Hilton. 4 VERY special people gone, but not forgotten.

This site WILL continue on- in Memory of, Lamar, Kathleen, Roz, and Alice.

Group Owner:Becky M. Group Moderators:Tina T. - Kay S. - Erin K. - Sharon C. - Jenn R-S LOGO by: Susan Kinney

Disclaimer

This site does not engage in offering medical advice or professional opinions. The information provided here is designed to help support, not replace, the relationship that exists between a patient and their physician or healthcare provider

Most Recent Messages

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Re: Hamstring Tightness
I have CMT 1A, and I've had tight hamstrings all my life. I was also born with a shortened Achilles tendon, which is what I always thought caused the
Posted - Thu Nov 19, 2009 5:48 am
Ivonne Hernandez
ivonnehdzsid
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Hamstring Tightness
Is hamstring tightness something that you experience with CMT. My 5 year old has CMT. We saw several specialists today and one informed us that she seems to
Posted - Thu Nov 19, 2009 5:36 am
mom2m2
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Re: Severe Severe Calf Muscle Spasms
Thanks Lana - The doc did add Magnesium to the daily regimen and increased the Cymbalta...It took almost 2 1/2 weeks but Andrew is doing much better. He seems
Posted - Sun Nov 15, 2009 8:51 pm
phantomsec4
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Re: how much I have to slep every day?!!!!!!!!!!!
Perhaps if you feel good enough, 6 hours is fine for you. Others might need more sleep. I know I need at least 8 hours. Sal
Posted - Sun Nov 15, 2009 4:46 pm
sal2491
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how much I have to slep every day?!!!!!!!!!!!
I have CMT 2. I sleep 6 hours every day. 6 hours from 24. What do you think, is this sufficient?     ... From: fittness <Brianwahr@...> Subject:
Posted - Sun Nov 15, 2009 2:37 pm
orania nassau
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