r/CMTHMSN•
DeeDeeRaven

Is there someone in the group who has experienced any vision or hearing loss due to CMT?

I am F31 and have recently been diagnosed with hearing and vision loss due to an aggressive mutation of CMT type 1. I have been diagnosed with CMT for 5 years and have mild to moderate effects on my hands and feet. However, in the last year I have started to notice changes in my hearing and vision, especially when I am outside or around a lot of people, I can't hear some higher frequency sounds that I used to hear, I also have difficulty seeing in the dark. I was really shocked by this diagnosis because everyone in my family has CMT on my father's side as well as my siblings, but no one has this mutation, I initially didn't connect them to CMT, but as they became more common and more obvious, I went for some tests and was diagnosed that it is actually related to CMT. The worst thing is that the doctors cannot predict how fast and severe the loss will be or give me any concrete answers, they told me that the complete loss could occur in the next 10 years or that I could live to an old age with weakened but existing vision and hearing, that I would see how aggressive it would be along the way. At the moment my vision is more affected, especially at night, but I also feel changes in my hearing which sometimes causes migraines. I am terrified that I could lose my hearing and vision. Especially because I was somehow prepared for the diagnosis of CMT because on my father's side many members of my family have been diagnosed with it, but no one has these side effects. So please, if you have any experience, similar problems or have any advice, I would be very grateful if you could share it with me.

Posted Jan 28, 2026, 11:12 PM UTC

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