Hi Michelle,

I was diagnosed with WG in 2007 and just before that I had some hearing loss. However, just as I was diagnosed and started up on my treatment, I completely lost my hearing in my left ear and ever since I've been hanging on to my right ear. Your uncle needs to see an ENT specialist or at least an audiologist who will do a hearing test and tell him whether or not it's permanent hearing loss. My left cochlea was damaged so much that the hairs are completely gone - hence I can no longer hear - they call this sensorineural hearing loss and it's permanent. Your cochlea is actually a nerve just like your spine which is actually formed in the fetus within the first three months so once destroyed it can't be "fixed" (there is stem cell techology but just not available yet!). If the ears just have an infection (caused by WG) and the middle ear is involved - meaning the ear drum and those bones just behind it, they call that conductive hearing loss which can be fixed - eventually! All of this can be determined by just a hearing test and an ENT specialist can give you better information.

I now wear a hearing aid on my right ear, but it's not the same. I was told from the beginning that my hearing loss was permanent and yet (even to date) I keep up the hope that it will come back because it's been very difficult to accept this disability in life - it really is debilitating - simply to not hear! The only hope is that if your uncle losses all his hearing, he won't ever be deaf - he can always get a cochlear implant - but that's a whole other message.

Let me know how he's doing, make sure you get the best possible ENT or ear doctor who can work with the WG specialist as this was key to determining when the WG was under control. I still struggle with more hearing loss every time I get a flare up so it's a never ending struggle for me. If you or he needs any support or more info, be sure to contact me.

Good luck
Gurinder