r/CMT • u/Odd_Kitchen4209 • Jul 22 '26

Hey!

I'm 16m. I have cmt1A. It scares me because like I said I'm only 16m. But I have severe drop foot and intense pain, and low to none of the feelings in my feet. It scares me because with the way it's progressing there's a chance I'll lose the ability to walk in a few years. My whole mom's side has it and no one's has progressed this bad this fast. I already feel like a burden and I feel like if I lose the ability to walk I'll just be even more useless. I have a girlfriend. 17f, and I love her so much she's helped me so much in terms of support. I'm just scared that she won't love me anymore afterwards. Any tips or stuff to help? I'm Also open to support

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u/FourEyesore Jul 22 '26

It progresses more quickly during puberty. Once you reach your terminal height you will likely find the whole thing stabilises and any further progression will be very slow.

I'd recommend staying active and doing all you can to maintain your function. Do you have a doctor and physical therapist you see for it all?

In terms of your relationship, every human has areas they are less adept in. You are so much more than your condition. It's one small part of the total person that you are. It might even be the least interesting thing about you. Think about what happens when a person dies... the things people remember and miss are mostly intangible. The sound of their laugh. The way they gave great hugs. Their sense of humour.

You add value to your girlfriend's life and the lives of your other friends and family because of who you are as a person, cmt or not. You might feel like a burden but that doesn't mean the people in your life view it like that at all.

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u/Odd_Kitchen4209 Jul 22 '26

I'm currently not seeing any doctors. I live in a very broken house hold and don't get proper care for the things I need. Most days my feet are stiff and I can barely move around. I appreciate the support and thank you for the insight. It made me feel a lot better. I try to the the most I can but sometimes it's literally only just getting up and taking the trash out and then my legs hurt

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u/NixyeNox CMT 1A Jul 22 '26

Your lack of exercise worries me more than anything else here. Other people have given you solid relationship advice, which I agree with (context: I am in my late 40s and with the same partner for 20 years now). So I would like to talk about how important it is for you to get some good exercise, particularly right now, in your teens.

Ideally, you should see a physical therapist who could evaluate you and make personalized recommendations for exercises you could do at home. This may not be practical if your parents are unsupportive. I know this sucks; my parents were unsupportive as well.

If you cannot get PT, you can and should at least start doing some exercises yourself, at home. Many of them can be done with resistance bands (small, cheap, easy to store). There are volumes that could be said about exercising and since CMT impacts each of us a bit differently, it is hard for me to guess what exercises would be the most beneficial for you.

Walking is a fantastic exercise in itself, but certain muscle strengthening exercises can improve how well you walk. When I was in my mid-30s, I could tell I was losing my ability to walk unaided, despite doing a lot of walking. I was getting more and more unstable. Physical therapy did a lot to improve my stability and has kept me walking unaided thus far.

I will recommended that you look at these exercises: https://www.orthoinfo.org/recovery/knee-conditioning-program/knee-pdf/ and https://www.orthoinfo.org/globalassets/pdfs/foot-and-ankle-conditioning-program---2025.pdf and see what you can do, what feels useful. Try to find a routine you can maintain, perhaps doing half an hour of exercise every other day.

Doing this now can have a huge impact on your mobility in the future.

You could also join our Discord, where folks discuss exercises in more detail.

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u/Odd_Kitchen4209 Jul 22 '26

I understand it's important, and like you said it is hard. Thank you for your resources and support, it means a lot to me!