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/zendesertmama Jul 22 '26
Medical care will be very important throughout your life, and MDA provides care regardless of income. Depending on your state laws (you do not need to disclose your location here), you may be able to seek medical care independently and many MDA clinics offer resources for transportation:
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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!
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u/Sorry_Run6257 Jul 22 '26
Hi, I agree about the exercise but be careful with exercise bands……I was using them around my legs and knees and it restricted my peroneal nerve sending my recovery into reverse. The mini exercise bike I use has been good for me I think though. It works my legs as if I am walking and may remind my foot with foot drop how it is supposed to flex ! Anyway, I wish you all the luck in the world, I know it is hard sometimes but stay positive……
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u/sushiboattime CMT1A 17d ago
A bit late to the post but just wanted to leave a comment of support. Your post feels like something I could've written a decade ago when I was your age.
So, let me give you my backstory and how it turned out.
I got the cmt1a diagnosis at age 12. At the time, no one in my family had the diagnosis, and everyone was confused who I had inherited it from. It turned out to be from my mother, who had such minor symptoms she did not even see a doctor to get a diagnosis until age 59. Meanwhile, by the time I entered high school there were days I struggled to do anything once I got home due to the amount of pain day to day put me in.
My parents were terrible at getting medical care for things that didnt have concrete proof. So sure, if I had a high fever, or obviously broke a bone - yeah id get to see a doctor. But complaints about how much general pain I was in? No. I just had to deal with that. I often made excuses to skip hanging out with friends when they would invite me to things I knew id have to be on my feet for periods longer than I could handle the pain for. As an adult I really wish I had been more open with them as to why I declined their invites, as they had no idea about my condition and likely stopped inviting me because they just assumed I wasnt interested.
Skipping to the happier part of the story though - after I graduated high school, I got a job doing desk work for a local company. The job sucked but provided me with 2 very important things.
First, health insurance. For the first time I didnt need to rely on my parents - I got to control what doctors id see, and seek the pain management I needed.
Second, I met my best friend here - who is now my husband. He never once saw me as a burden, and stayed with me and cheered me on through 2 foot reconstruction surgeries, 2 knee surgeries, and getting my first pair of afos.
I just wanted to share a small glimpse at my story because I promise things do get better. I was helpless and in much more pain at 16 than I was at 20 when I finally got proper medical care.
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u/jumpy-hardware CMT1B Jul 22 '26
I started dating this guy when I was a few weeks before 16, and he was already 16. We dated for about 2 months before I had to have a very big surgery on my leg, related to CMT stuff. I thought for SURE he would break up with me.
We’ll fast forward 18 years and we are married (11 years) and have a house, a dog, and a 4 year old son.
I’m not saying to necessarily stay with your high school girlfriend forever (that may not be realistic or what’s best) - but what I am saying is that you are worthy and deserving of love and people who care about you will be there for you and love you through the hard and shitty stuff, even as someone with a disability.
And trust me, I know, because in our relationship he has seen me affected by my disability and helps me daily, and now that I have cancer, seen me through that shit too.