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.

[@armandtpienaar870]

Some people make it sound as if its easy to live with, its far from that, I've gotten so used to the pain and spasm that it doesn't even phase me anymore, but that constant fractured ankle feeling.....will never get over that

[@baha_bait]

I was born with CMT, now I am 17, and I feel it get worst every couple of months. I struggle with doing many "normal" life activities. But keeping a positive attitude on it definitely brightens my view on living with CMT

[@CHEBOYKA]

Hi, do you mind me asking, does it only affect your legs or also your hands?

[@_edoyt]

17 now, fucking despise this neuropathy, made me hate every single aspect of day-to-day life.

[@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!!!

[@megafuzz98]

My cousin David has CMT and everyday I pray for a cure. I love you David. Keep on trekkin'.

[@AshokKumar-jn2el]

Brother cmt diseases better treatment in India Kerala state.Ayurveda this diseases better treatment and your life happy

[@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.

[@InspiredInsights4U]

You’re definitely not alone my mother is whom I inherited my CMT from and Dr‘s for years told her it was all on her head prescribed a lot of different drugs to her that did absolutely nothing and probably did more harm done and it finally when she was diagnosed doctor said all that will only Affect the women in the family it would not affect the men well goes to show you they didn’t know much back then now I am being treated best they can although there’s no cure original and I must say make sure you have a good doctors look for a CMT center for excellence and join the HNF and the sea MTA they are both wonderful organizations that help provide as much information as possible

[@heatherrowell3008]

My niece has CMT she is a beautiful and vivacious girl who wants to try everything, to "have a go" I pray that the medic researchers do find a cure, to give Naomi and other sufferers a longer life.

[@AshokKumar-jn2el]

Coming India in our Kerala state .Ayurvedic better treatment in kerala

[@TheTrippinhard]

I hated when they did the electrode test to me. They had to pump it to 100% just to get a single toe to move. Im happy to know that these vids are on youtube, cause now i can finally relate to others and possibly even have future conversations with people on tthe subject. And so people know, i've had my operations to correct my feet as best as possible, so if you have any questions, please dont hesitate to ask me, cause i know how scary it is going in for an operation the first time.

[@renelletoolie604]

I'm getting surgery in my feet soon and I'm really nervous. I'm so afraid of surgery they actually wanted to do surgery in my knee as well but I said no but now I'm getting surgery. I'm 13

[@mitiekoroblox]

@@renelletoolie604hi can i get ur insta pls

[@renelletoolie604]

Mitak Odda00 Hi, I'm a little confused by this. Is there a reason you're asking me because it's kinda random.

[@mitiekoroblox]

@@renelletoolie604 just to chat i have cmt too

[@renelletoolie604]

@@mitiekoroblox okay I guess so it’s renelle_toolie

[@dinkytankman]

I have lived with CMT since my late teens. I'm 67 now. Difficulty with buttons, laces and zippers when it's cold. Legs have atrophied below my knees but walking is "ok" with braces.Feet are like ice when it's cold. I guess I'm better than many. I "just keep on going."

[@tickyul]

I got diagnosed with Cmt1a at age 40. It all became clear, why even the fat kid would beat me in sprints, why I lost 25 lbs of muscle in bootcamp (even though I was eating 5-8 thousand calories a day), why, when I have been lifing weight since I was a kid, I never got strong. Cmt is supposed to be the most common form of PN, but most doctors I have talked to have never heard of it (except neurologists). Demylation of the PNS has a lot of implications beyond just effecting the arms and legs.

[@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,

[@nellamc5833]

God bless you all! They all seem so positive!

[@farhanduaa41]

Dont lose hope guys ❤️ its okay if we can't make others understand why we are the way we are. It's alright if many of our goals and dreams are not there anymore. Just breathe

[@Kng-nb6es]

Its insane how it affected my mother and all her children. I wanted to join the military but now thats just a long lost dream.

[@sydneyliles5752]

You are not the only one. I wanted to be in the marine corps my whole childhood. Then at 12 i was diagnosed

[@InspiredInsights4U]

I am 60 and I have CMT type 1a my answer from the CMT wasn’t until I was in my late 30s I did join the military right out of high school and served proudly honorably discharged and I have had a very busy working life as well but as the onset of the disease came in my late 30s early 40s I have definitely noticed a huge change my life now I say live the life you can do as much as you can

[@OfficialPeterFisher]

I have this disorder and it's quite a lot to live with sometimes. It was much worse when I was a child then now as an adult.

[@carogothe3205]

Peter Fisher me two

[@jadeisla5421]

I'm sorry!💛 What is cmt??

[@finnthefuzzymoth1717]

@@jadeisla5421 lmao this sickness

[@jadeisla5421]

@@finnthefuzzymoth1717 I did some research last week, ik lol

[@klartava]

l have cmt too. grade school was the toughest, l dreaded relay races, always got picked last, 72 now walking is tough, and hands are useless, but some are worse than me, so we live with it

[@catrinevans7549]

I have CMT I hope we could get a cure for it

[@timdeathly]

They can't its a chromosome dysorder, no cure any where near. Sorry!

[@Roy_Boy4.1]

@@timdeathly people who have CMT are well aware of that Tim. Does it please you to shoot down a persons hope?

[@timdeathly]

@@Roy_Boy4.1 Just being realistic, sorry you can't take the truth!

[@Roy_Boy4.1]

@@timdeathly I live the "truth" every day

[@tenniscourt5831]

I just found out the name of this inherited disorder a day ago when I brought my daughter in to see her neurologist (for Epilepsy) The doc asked if there were any genetic disorders in my family. I mentioned how my gr. Grandmother, grandmother, father, three brothers and sister and a nephew have these symptoms. Five generations. We called it the Magee walk. Nobody would do genetic testing for it. But my dad did go to Stanford in the 50s to have it diagnosed and they mentioned some "neurological" link. In spite of CMT, they were/are bright, adventerous, artistic and personality plus! They are the charmers of our family! So hang in there and live life to the fullest.

[@SweetZD]

I have cmt type 2k and would probably not be able to walk anymore if it wasn't for getting surgery a few times.

[@peterharris6604]

In hindsight I have had CMTA1 from childhood. As a child my father would wrestle me and tickle the sole of my left foot, I would fight like hell because of the pain. My brother (1 year younger) was ignored because he didn’t react and showed no reaction,so in hindsight since a child. Thanks

[@XEXERONIX999_KSG]

I have cmt, I forgot what the type was but most of my goals are faded

[@tempaauffart1196]

CMT can be passed by recessive patterns of inheritance. Neither of your parent's would actually have the disease, but they would both have been carriers of the disease.

[@samsungandroid7180]

Hello the best info that I have ever had was by following the Nats Neuro Site (just google it) - definately the most incredible info i've followed.

[@user-lg6sq1cu6z]

i have cmt4c, may be only one in hong kong

[@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.

[@sionepaleituiano1682]

Hay Bro You are right . im going throu the same problem bro . we should chat some time .

[@farhanduaa41]

Its alright, we will get thru this life ✨

[@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

[@InspiredInsights4U]

There are a number of organizations and support groups around the world where people just like you and I can communicate with others who have walked in our path and can help you with the day-to-day struggles that you’re having Look for organizations such as CMT a and the Hereditary Neuropathy Foundation you will find support groups listed within these organizations and they will help you to join with others to better understand the disease

[@ericajo114able]

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

[@TheTrippinhard]

Well i know that when i was a teenager, i didnt have any serious issues show up till i did start growing more. Was round about when i was 14 - 15 that i started to notice my condition get worse. But then again, each person may be different because most of my condition was prominent in my feet, whereas some ppl have it in their feet and hands. So i guess your best bet is to talk about it to a specialist and see what they have to say.

[@carogothe3205]

Eckhart Tolle eö

[@leelz477]

Und nu', nach 5 Jahren, hast's auch in den Händen

[@CYBORG_META]

I have CMT and in south korea

[@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.

[@purplesprocket]

I have c.m.t after over 27 knee dislocations i was diognosed even now the doctors wont really help me and i'm getting sick of the amounts of screws pins and plates in my body, i heard the gene is from your parents but neither one has it can anybody out there help with info?

[@carogothe3205]

Jay sandford stay strong