For the past two years, the Inspire community members have continued the discussion about hearing loss and CMT. It’s remarkable how we can come together and share the challenges we face and realize we’re not alone.
Even more importantly, our collaborative voice becomes stronger through community. Our shared stories help show a connection between CMT and the symptoms we experience, such as hearing loss. Sensorineural loss, or hearing loss, can be unilateral (in one ear) or bilateral (in both ears). Hearing loss is caused by damage to the nerve pathways from the inner ear to the brain, also known as the cochlea.
Hearing aids work for some CMT patients with sensorineural loss. Cochlear implants may be a better choice for those with more severe hearing loss, or for patients who no longer find hearing aids helpful.
While a hearing aid simply amplifies sound, cochlear implants convert the sound to electrical impulses that are then transmitted to the inner ear. This process gives people the ability to understand speech without having to read lips.
Most health insurance companies cover the cost of the implants. An audiologist associated with a cochlear implant clinic should be seen for an evaluation.
HNF is interested in learning more about the causes of hearing loss and collecting data on what forms of CMT affect hearing. If you are a CMT patient experiencing hearing loss, please consider joining HNF’s patient registry GRIN. Your information will help advance the research that could lead to future treatments and cures.
You can join the registry click here.