Charcot-Marie-Tooth Disease: A patient's perspective

Several patients share their perspective on living with Charcot-Marie-Tooth disease. Also find out about the CMTA's ambitious Strategy to Accelerate Research (STAR) that aims to rid the world of CMT.

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[margieonthemoon1]

I'm doing a report about this at school, its a very fasinating disease. I can't believe its soooo common but i've never heard about! GO AMY GO!!!

[purplesprocket]

@MsEternallyYours, yeah i have been tested and because its working so fast now they think its level x so theres not much they can do apart from fob me off with more surgery that doesnt heal right because of lack of muscle in my legs.It was thought i have missed a few generations to get it and its affected me through out my life,I am sad because they have so many cures out there and c.m.t is widely known about but there is nothing they can do.

[MsEternallyYours]

@purplesprocket I've only suffered one knee dislocation thus far and a few torn ligaments but I can sympathise with your frustrations. The gene is usually inherited but you can be a carrier for it rather then have the full gene so perhaps one of your parents was a carrier and you were just unlucky. Have they been tested? I inherited mine from my dad.

[MimiDoesIt20]

@LadyBrennon I know a lot about this disease and I have been diagnosed with it since I started walking. I am constantly researching. I just say have a neurological disorder that causes muscle wasting and weakened muscles. That's the simple explanation rather than give them a long speech

[suzannebabygirl1]

Please spread the awareness about this disease. It affects my family including myself but worst of all my son! When he is in pain there is nothing I can do about it but stretch his feet or legs and rub them BECAUSE there is no cure..It breaks my heart...I know that I gave this to him He has had two surgeries already. It helped somewhat but still he has difficulty walking and pain after standing.  so please please repost this for CMT awareness month!

Most Sincerely,

Suzanne Neilsen

[ericajo114able]

@LadyBrennon i know what you mean. i have this as well unfortunately

[LadyBrennon]

When i go to try to explain this to others they look at me like im wierld. They dont understand. At work its hard, as They dont undestand and when i do try to explain why things happen etc they cop an attitude or think im making it up, but How can one make it up when there is visible proof. I would love to be able to communicate with someone who is well knowledgable with this disease for support and comfort. I know its not the end of my life or world but its hard.

[LadyBrennon]

Hello, I was just dignosed with CMT a few months ago, I am so frustrated and confused and emotionally frustrated over this dignosis. I dont understand sometimes. I have to walk with a cane and wear leg braces or orthodics. My daily living has changed so much. I cannot do the things i used to before. I have issues standing by myself at times as my knees buckle often and i have fallen or almost fall. I am so glad to kknow ther are folks out there that have this same disease.

[Joyce79102]

I've been teased about my thin lower legs all of my life, but my mother had the same ones (my daughter and her two teenaged sons).  I have diabetes, neuropathy in my feet, I began kidney dialysis two years ago. I just saw my neurologist and at the age of 68 years, he told me that I have Charcot-Marie-Tooth Syndrome! Imagine, I'm a Senior Citizen and just now finding this out?

Blessings to all,

[ayaquika]

ola desde mexico no pretendo pedir ayuda economica o de algun tipo de dinero o publicidad yo tengo esta enfermedad en estos casos creo que la mejor ayuda que se puede brindar a alguien es conocer a personas como tu y platicar de esperencias quiciera saber si hay algun modo de comunicarme con algunos de ellas saludos dios los bendiga