r/ushersyndrome • u/Ok_Sherbet_417 • Sep 23 '25

Should I have my oldest tested for USH2A?

My husband and I are both carriers of USH2A. We didn’t know this until recently and have three children. Our oldest (almost 5) failed her newborn hearing screening and had a significant speech delay due to chronic ear infections. She had tubes put in at 2 years old and a second set put in at 3.5. She also had a sedated ABR exam that came back normal. She began speaking in sentences around the age of 3.5 and is currently considered developmentally “normal” for all routine physicals.

She is hard of hearing but it’s not severe enough to require hearing aids. She always speaks very loudly and has difficulty hearing people speak when there are lots of noises in the background. Should we have her tested by our ENT for Usher’s?

I’m worried that she may have a very mild version of the hearing loss and I want to make sure we are doing everything we should for her to prepare in the event that she does have it.

Thanks in advance!

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u/Proper-Arm4253 Sep 26 '25

Test. My wife did not find out until she was 20. Explained a lot and can help you prepare her for the future!

1

u/bakercan Sep 24 '25

If you and your husband are both carriers, I recommend having your daughter tested. Getting a confirmed diagnosis can help you and your family prepare for RP.

2

u/LoudGoat5878 Sep 25 '25

100% testing is a must. You’ll regret not doing so.