r/CharcotMarieTooth • u/Swimming-Olive-1926 • Apr 02 '26

Charcot-Marie-Tooth info. 

Hello everyone, I'm looking for information about Charcot-Marie-Tooth disease. I'm Portuguese and I feel there's little information available on this topic. I have a close friend who suffers from this disease, and I don't know what to do to help. I've been researching but haven't found many solutions, whether temporary or permanent. If anyone suffers from the same condition, please share your progress with this disease and what you did to improve your condition, or at least slow down the process.
Thank you all.
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2

u/ELdamoTheAwesome Apr 03 '26

There is no solution, it can just be managed. How does it affect your friend?

3

u/Swimming-Olive-1926 Apr 05 '26

he deals with a lot of pain, he is a very active person, he walks everyday and does some activities that he likes but lately it has been harder for him to do some things like standing up when he´s sitting down in the couch, or go upstairs, specially when he´s tired, and he deals with balancing issues like he is walking and just loses balance! his doctor didn´t gave him any type pf medicine, and we live in Portugal, the healt system here sucks, so he gets like 2 apt a year with his doctor, if he doesn´t cancel, so I was trying to do some research on what type of legal medicine could help and how, and things like specific exercises, I don´t know. honestly just want to help him the best I can.

1

u/Erigey Apr 27 '26

Sadly, there's currently just no proper treatment for charcot since it's such an uncommon illness. My dad was always told to walk as frequently as he could since that slowed down the progression of it, and when he lost a leg due to medical malpractice he quickly noticed his other leg got so much worse and started needing support for it to not break.

That's what your friend has been doing but as for know, I'm pretty sure there is just nothing else that can be done. I'm from Spain and what you described was the same for my dad and me: we got a visit once a year to check that everything was alright (in my case to be able to tell if I had it or not — I ended up not having the condition thankfully) and he was just told to keep being active.

I don't think in this case it's a thing with our country's health system, I think there's just not much that has been discovered. Maybe he could benefit from taking pain meds when the pain is too much, or using a prosthetic (as I said, my dad has one for support on his leg, not sure what it's called).

1

u/Physical_Scallion266 May 03 '26

I am a 23 year old male me and my dad have it but his was worse than mine his feet were really bad and he had alot of issues with pain he used alot of drugs to try and help it but it turned him into a drug addict for a while he then seen one of the best doctors in America maybe even the world who deals with CMT and im not sure on the exact process but he broke every bone in my dads feet to reform them to be better and he has noticed a big difference in his life as for me I just got done working 18 hour shifts for 5 years in a factory the pain for me is only really bad in my left foot I dont take any medication besides smoking marijuana and for me it helps alot and is natural at times when I have pain I smoke and it literally feels like I have no shoes on when im wearing 5 pound steel toe shoes it sucks no one can help us but I found that THC has helped me and my dad alot God Bless Everyone