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Transmembrane inner ear gene as cause of profound deafness

Posted by f
26/05/21 09:44 PM


We have just received a diagnosis of the transmembrane inner ear gene being the causative gene causing my son's profound hearing loss. 

Just wondering if anyone has the same diagnosis?


Posted by Frances ndcs moderator
10/06/21 02:54 PM


Thank you for starting this thread. I’m sorry you’ve not had any comments yet - the community is still quite new and hopefully other parents will respond in time.

If you’d like further advice or support, you are very welcome to contact our Helpline

Take care,


Your Community moderator team

Posted by [email protected]
11/06/21 12:33 AM

We have a similar diagnosis for our daughter  It's not exactly the same but similar. 
she was diagnosed as being deaf at 3 months but it took a lot longer for the why to come along. I have two older children and no deafness in the family so was quiet a shock to find it was hereditary and that me and my husband are carriers. 
how old is your son? 

Posted by f
11/06/21 11:14 PM

Hi jj123

Thanks for your reply. 

Oh when you say not the exact same diagnosis what do you mean? My son was diagnosed at 2 weeks old on his ABR after failing the newborn hearing screen. He has profound deafness bilaterally. How old is your daughter? Have you and your husband been tested for carrier status? We are going to have our bloods next week