Re: Info on connexin 26 gene

[Guest guest]

Hi Cheryl,

A high percentage of kids with Cx26 have a profound hearing loss and many of

those children use CIs. Current research indicates that kids with Cx26 who do

not benefit from hearing aids do extremely well with implants. However, not all

Cx26 kids have a profound loss and not all Cx26 kids require implants. There is

newer research that indicates that there is a correlation between progressive

hearing loss and Cx26. Some Cx26 kids with a less severe hearing loss develop a

progressive loss that makes their hearing aids inadequate and therefore qualify

for a CI. Since all of us, Cx26 or not, want to monitor our children's hearing,

it just makes regular hearing evaluations all the more important.

Here are a few sites that we have found helpful in learning about Cx26 and

staying on top of the research. These links also provide information about how

to enroll your child in current research projects, if you desire.

Connexin deafness homepage: http://www.crg.es/deafness/

Hereditary Hearing Loss homepage: http://www.uia.ac.be/dnalab/hhh

Boys Town National Research Hospital: http://www.boystownhospital.org/home.asp

Harvard Center for Hereditary Deafness:

http://hearing.harvard.edu/index.htm (Heidi Rehm is a great resource here; she

has personally answered many emails and talked to me in the early stages of

learning about Cx26). You can order a booklet on genetics and hearing loss

through here, or download it.

No matter what the cause of hearing loss, there are no guarantees for the

future. Don't worry about what you can't control, but focus on what is in your

power to monitor, maintain and improve.

Good luck!

Kerry

Info on connexin 26 gene

Hi. tested potivite for the connexin 26 gene mutation (I guess

that's the way you'd say it.) The doctor couldn't tell us exactly

what this means for her hearing in the future, but indicated most

children with this genetic marker end up getting CIs. Can anyone

point me to useful information on the gene and it effects?

Thanks,

Cheryl

[Guest guest]

Hi, Cheryl, my son's hearing loss is also due to cx26; there's a website

with info on this: http://www.crg.es/deafness/

I have not heard that most of these children end up getting CIs. What I have

heard is that cx26 can cause losses from moderate to profound, and that

about 20% of these losses are progressive, but they can't tell you right now

which ones those will be.

Hope this helps,

Stefanie

on 4/8/04 8:13 PM, falterm at cfaltermeier@... wrote:

> Hi. tested potivite for the connexin 26 gene mutation (I guess

> that's the way you'd say it.) The doctor couldn't tell us exactly

> what this means for her hearing in the future, but indicated most

> children with this genetic marker end up getting CIs. Can anyone

> point me to useful information on the gene and it effects?

> Thanks,

> Cheryl

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

> the intellectual property of the author and therefore subject to copyright

> restrictions.

>

[Guest guest]

Hi, Cheryl, my son's hearing loss is also due to cx26; there's a website

with info on this: http://www.crg.es/deafness/

I have not heard that most of these children end up getting CIs. What I have

heard is that cx26 can cause losses from moderate to profound, and that

about 20% of these losses are progressive, but they can't tell you right now

which ones those will be.

Hope this helps,

Stefanie

on 4/8/04 8:13 PM, falterm at cfaltermeier@... wrote:

> Hi. tested potivite for the connexin 26 gene mutation (I guess

> that's the way you'd say it.) The doctor couldn't tell us exactly

> what this means for her hearing in the future, but indicated most

> children with this genetic marker end up getting CIs. Can anyone

> point me to useful information on the gene and it effects?

> Thanks,

> Cheryl

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

> the intellectual property of the author and therefore subject to copyright

> restrictions.

>

[Guest guest]

Hi, Cheryl, my son's hearing loss is also due to cx26; there's a website

with info on this: http://www.crg.es/deafness/

I have not heard that most of these children end up getting CIs. What I have

heard is that cx26 can cause losses from moderate to profound, and that

about 20% of these losses are progressive, but they can't tell you right now

which ones those will be.

Hope this helps,

Stefanie

on 4/8/04 8:13 PM, falterm at cfaltermeier@... wrote:

> Hi. tested potivite for the connexin 26 gene mutation (I guess

> that's the way you'd say it.) The doctor couldn't tell us exactly

> what this means for her hearing in the future, but indicated most

> children with this genetic marker end up getting CIs. Can anyone

> point me to useful information on the gene and it effects?

> Thanks,

> Cheryl

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

> the intellectual property of the author and therefore subject to copyright

> restrictions.

>