Mnemia

CMT is also known as hereditary motor and sensory neuropathy. It’s basically a neurological condition that causes your peripheral nerves to slowly degenerate and die back from the tips inward. It usually affects the longest nerves more severely (like the ones in your feet or hands). It’s genetic and usually inherited from a parent. There are many subtypes with different genetic causes, but broadly two main categories: demyelination types and axonal types. Type 1A (what the OP has) is in the first category, and this basically means it causes the protective sheath that surrounds the nerves to degenerate. Type 2 (what I have) affects the nerve axons (part of the neurons) directly.

The effects are that you lose both sensation (pain, temperature, pressure, touch) as well as motor control (ability to control your muscles) in your extremities. This then causes muscle atrophy (degeneration) because you can’t use the muscles. And that then usually causes orthopedic deformities like misshapen feet. All of these things put together mean that it’s hard to walk or run normally, and that balance can be very poor (you need your sensory nerves to provide feedback to your brain in order to tell it where your limbs are in space and how they are hitting the ground and distributing your weight). The weakened muscles also often make many people very fatigued in a more general way. Some types also have more severe involvement of other neurological functions like autonomic nerves and those involved in other senses like hearing and vision.

Source: have CMT.

Not the OP, but I also have CMT, though not nearly as bad (an interesting thing is that it varies dramatically in severity and progression in part because it’s not really just one disease but a term for a lot of genetic conditions with similar effects).

First symptoms I noticed were inability to pull back my toes. Eventually I developed gait abnormalities and started falling frequently. I finally had to get leg braces when I fell and broke my arm in a crosswalk. So it’s generally slowly progressive loss of sensation and motor control in the extremities followed by muscle loss and subsequent orthopedic effects. Some people have associated pain but I personally don’t.

It’s been fine for me (I also have CMT). In my case it mostly only affects my lower legs and it’s not really an issue for sex.

I do sometimes struggle a little bit with feelings of unattractiveness because of my leg braces and atrophied lower leg muscles, but it’s mostly a psychological thing rather than a real thing. My wife has no complaints about it :).

I feel the best approach with disability is to just own it and make no apologies. While it’s part of who I am, it’s not the main thing that defines me. I don’t give a damn what other people think about it, and i honestly don’t even think of myself as “disabled” most of the time. I fortunately have a job (software development) where it really is not an issue and doesn’t impede me in any way.

In fact even a lot of neurologists only have surface level knowledge about CMT. You really have to go to a specialized clinic for it (usually at a major teaching hospital) to find a doctor that has any in-depth knowledge. Although it’s sort of pointless a lot of the time because there currently isn’t really a lot they can do about it.

I have CMT2, and the one thing I’ve had to give up that I really miss is downhill skiing. I wish I’d done more of that while I still could. I tried some adaptive skiing but I struggled a bit with the fatigue aspect and found it very exhausting. I’m trying to build up enough muscles in the way I can that I can at least participate in it a little bit again.