Gene Therapy

[Ginette]

I was born with severe to profound hearing loss in my left ear and profound in my right ear. Just last year I became friends with a group of hearing women. Initially I felt welcome but lately I have been feeling angry.

Three of these women have daughters that have been implanted. They were insulting Deaf people, their lack of speech and ASL that promotes "illiteracy" hence why they decided to implant their girls. At this point I spoke up and told them I was deaf, they were shocked and apologized profusely. Then one insisted that I was hoh because my speech was "normal" (I wear a hearing aid in my left ear which helps assist me when it comes to lipreading)

I even had to show them my audiogram to prove that I was just as deaf as their daughters. I explained to them that every deaf/Deaf/hoh situation is unique. They have said so much that makes me angry. After I confessed that I was deaf they have been putting the pressure on me to get a CI. WHY????????? can't they just accept that CI's are not for everyone. Also I have a pre existing health condition that affects my immunity, hence why I am a bit scared of risking an infection.

I don't feel "broken" or "half a person" because of my deafness. In fact I have embraced the silence. My deafness has made me who I am today. I will never know what it is like being hearing..how can I miss something if I've never experienced it.

Truth be told I would be more than happy to accept the gift of hearing from God but until then I am not willing to get a CI. Today I was surfing the net when I came across this article. Now this is something I would be more likely to consider.

UMHS Press Release: Gene therapy restores hearing in deaf animals

Check it out and I'm curious to hear any imput. Also how long do you figure it would take before the deaf/hoh receive this treatment?

 

[deafdyke]

Ginette, nice to hear from you. I wondered where you'd disappeared to!
Gene therapy is still really in the maybe it might help/maybe it won't stage.
Besides, for all we know messing around with genes might cause unforeseen side effects. Like maybe the gene that causes the deafness, also might cause benificial things.

They were insulting Deaf people, their lack of speech and ASL that promotes "illiteracy" hence why they decided to implant their girls.

Oh god........don't even get me started on those types. They buy into AG Bell propaganda, that ALL deaf people grew up with ASL and poor speech training. I feel sorry for their daughters. Did you explain that not all deafies grew up with ASL and some of them are actually quite smart? I wish more parents understood that the reason why some Deaf peopel don't have great literacy is b/c they approach English as a SECOND language.

 

[Miss-Delectable]

Ginette,
To be honest, I don't think they're your real friends because they've revealed their true color when they discovered you're deaf and considered you as their mission to fix the defect.

If I were in that room with them, I would have looked at them with disdain and in a sarcastic tone saying "Gee, your daughter must be proud to call you mommy" then I'll say I pity your daughters when they have mothers like them.

Interesting article! I think it would be at least 10 years before they'll get approval from FDA and the like.

 

[Boult]

Ginette, as the article have stated...

Special notes on this release

Thank you for your inquiry about the recent announcement that U-M scientists have used gene therapy to grow new auditory hair cells and restore hearing in deafened guinea pigs. The scientists in Dr. Raphael’s laboratory sincerely appreciate the excitement this research has generated.

We know there are millions of people with profound hearing loss waiting for new, more effective treatments. Because of the volume of calls and e-mails we’ve received, we are unable to answer everyone individually.

While this is an important scientific discovery, please remember that many years of additional research will be needed before this technology can be tested in human beings. Before new therapies can be offered to patients, we must be sure they are safe and effective in animals. U-M scientists are working to complete this initial stage of the research as quickly as possible.

At this point, there are no immediate plans for clinical trials - either at the U-M Health System or, to the best of our knowledge, at other institutions. If you’d like more information about current research in Dr. Raphael’s lab, go to www.khri.med.umich.edu/research/raphael_lab/index.shtml.
(the link above is out of date so current is: KHRI: Otopathology Laboratory )

So it will be decade....

(anyway I notice Kresge Hearing Research Institute is where my Surgeon Dr. now work at... KHRI: Children's Hearing Lab )

 

[jillio]

Its a long way from guinea pig to human. If gene therapy is something that you are interested in, then by all means, keep up with the newest information. Just don't place too much hope on it becoming available on any kind of widespread basis any time soon.

Regarding these women: they are ignorant audists that are in denial and have obviously been brainwashed by some medical professional whose concern is how many surgeries they do rather than the well being of the deaf child. These women would have all been more of a benefit to their children if they had put a little effort into giving their children informed, tolerant, and understanding bi-lingual mothers instead of a CI.

Spoken language does not equate to literacy. These hearing women are evidence of that. Quite obviously, they have read nothing regarding deafness, and if they have read it, they have failed to comprehend it.

Good for you for standing up to these women and pointing out their ignorance. You have done their deaf children a favor.

 

[Ginette]

Yeah it has been four years, just got busy with the kids and life. It's good to be back though.

Looking back, I wish I was more straightforward and blunt about their ignorance. Instead I listened to them and allowed them to walk all over me. I sure hope they do what is right when it comes to their daughters.

I decided to walk away from the so called friendship.

To be honest, even if gene therapy never gets tested on humans...I need hope.