Tuesday, March 16, 2010

Genetic Testing

I've been thinking that the next time I make a visit to my audiologist (hopefully in the next month or so, but we'll have to see), I'll ask him about genetic testing. When I was a kid, in the early 90s, doctors said my loss was not genetic, but so many leaps and bounds have been done in this area of research. It wasn't until I started looking at other people's stories of their loss and what caused it that I realized the reason I have a hearing loss could very well be my genes.

I'd love to know what caused my hearing loss. Not for any particular reason, just to have the answers. To be told we have no idea when I asked why I was deaf as a kid was frustrating. Not only that, but if it is genetic, I'd like to know if there's the possibility my kids might have the same loss. Not that it would change my plans to have kids, but it's nice to know what might happen, and be prepared for it. Plus... I'm kind of a science geek and I think genetics is fascinating.

Have you had genetic testing to see why you have a hearing loss? If not, are you interested in it?


  1. First time I've stopped by your blog. :-) Nice. My hearing loss was discovered when I was 19, and diagnosed as "idiopathic" meaning they have no clue what caused it. It is a progressive hearing loss. So many things have changed since 1978 you can't imagine. Early on a doctor told me not to have kids. He said I would become more deaf and my kids would be deaf. What a lot of hooey! I got a second and third opinion, and went ahead with my life.

    I have become more deaf, but it had nothing to do with pregnancy. My three kids are now grown and all have perfect hearing. In the 1990s I had the Connexin 26 testing. Like you, I wanted to be prepared if my kids ever developed hearing problems, but nothing showed up, and all of my kids have perfect hearing still. They are all in their early to late 20s.

    I would love to know why I lost my hearing too. It would be nice to have an answer like say when the gynocologist asks me-- which happened just today. I always tell them it could either be some auto-immune disease or that I took streptomycin as a kid, but my hearing loss wasn't sudden so it isn't indicative of either. However since there are no tests to rule it out, both of those causes are still on the table.

    Weirdly, my husband developed an idiopathic hearing loss in his mid-40s. Such a strange coincidence. No one else in his family has hearing loss either, including his 80 year old parents. It's just us two. *shrug* :-0

  2. Kim, Thank you for your comment. It's very interesting. Was it progessive all the way up till you were 19 and just never diagnosed?

  3. I've had some genetic testing done, but it all turned up negative. I'm struggling with the same thing as you are, the not knowing can get to you! In fact, I just posted about it. I got some interesting responses.

  4. Hey, Megan! When I was younger I badly wanted to know why I was deaf. I was diagnosed with severe hearing loss at 9 months, it progressed to profound when I was 9/10 years old(one of the reasons I got a CI in my left ear) When I was 15, we went for genetic testing, they went through my family history, no signs of deafness in my family. So they think it might be the medication that I received whilst still in hospital(born 12 weeks too soon, in hospital for 13 weeks) Was tested for Connexion 26,30, other syndromes.
    What's interesting is that they said I have a autosomal recessive deafness.


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