Ehlers Danlos Syndrome and Hearing Loss

Ehlers-Danlos Syndrome can cause a defect in the sound conducting mechanism of the middle ear, and which may result in hearing loss. My “good” ear has been crackling and feeling less good. I see an ENT regularly and have shown a steady pattern of loss in both ears, predominantly my right ear.

What seemed like a normal follow up to see why the tinnitus and crackling has worsened in my better ear, ended up in receiving some surprising news.

My last hearing test was just 6 months ago and it is evident that there has been progressive loss. My doctor said she would not usually advise hearing aids at this level yet but considering EDS and the obvious progression, her opinion is to start now before it gets worse.

Today is one of those days where I feel just completely defeated by my body. The idea of hearing aids at my age…. but I will rock them. My purpose here is to help others like me to feel beautiful, strong and supported. So, I am taking another hit for the team.

Anyone else out there have hearing aids?

3 thoughts on “Ehlers Danlos Syndrome and Hearing Loss”

  1. I am glad I found your article. My daughter has been struggling with hearing loss on and off for almost 4 years, she is 13. Only last night was I made aware (by a family member who heard about it on an episode of America’s Got Talent) that Melanie’s hearing loss and her EDS could be connected. Needless to say, I am shocked that not one primary care doctor or ENT suggested this connection before now. I hope to be able to follow your journey for my daughter. BTW, when she has to wear her hearing aids she rocks them!! 🙂

  2. Not me, but an almost-certainly-a-zebra older relative did. In those days EDS wasn’t a thing, but that relative was so translucent it’s fairly apparent once you recognize the “family pattern.” My eyes have been my most affected organ, instead.

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