information about connexin 26

[Guest guest]

I'm looking for general information in plain English (or Spanish, for

that matter) about Connexin 26. I've found several sites that give

descriptions using lots of medical terms. I just want to know what a

parent might need to know, not what a doctor needs to know. You

know?

Thanks in advance,

Gisgie

[Guest guest]

From what I've heard, they just don't know: some kids with cx26 continue to

lose hearing, some don't. They can't yet predict which ones will.

on 12/18/03 1:54 PM, Gisgie Gendreau at gisgie@... wrote:

> This is a wonderful resource. Many thanks. I'm also looking for

> information on what the prognosis is for a person who is found to

> have Cx26. This site talks about how to test for it and what it is,

> but doesn't give much information about the prognosis. What I'm

> looking for is information on what we might expect if our children

> are found to have Cx26. Do most people completely lose their hearing,

> etc.?

>

> Thanks again,

>

> Gisgie

>

[Guest guest]

From what I've heard, they just don't know: some kids with cx26 continue to

lose hearing, some don't. They can't yet predict which ones will.

on 12/18/03 1:54 PM, Gisgie Gendreau at gisgie@... wrote:

> This is a wonderful resource. Many thanks. I'm also looking for

> information on what the prognosis is for a person who is found to

> have Cx26. This site talks about how to test for it and what it is,

> but doesn't give much information about the prognosis. What I'm

> looking for is information on what we might expect if our children

> are found to have Cx26. Do most people completely lose their hearing,

> etc.?

>

> Thanks again,

>

> Gisgie

>

[Guest guest]

Gisgie-

That's the big question. From what I've researched, Cx26 is still too newly

discovered for us to have much longterm research on it. People who are now in

their teens or adult years who were identified earlier in life don't go back to

do the genetic tests that are now available. Most of the longterm data

available is up to about ages 8-12 (followed from birth or early identification

of loss). When Hadley was first diagnosed almost 2 years ago with Cx26, we were

told that most Cx26 kids have stable hearing (assuming no other medical

complications). Recent studies have shown that, in a longterm study, some Cx26

kids did have a progressive loss. More recently, we've been told that Cx26 kids

who do require a CI do the best of all implanted kids (best meaning develop

clear, normal spoken language and have strong listening skills). This is all

developing information, and we just have to roll with it.

While I know we'd all like to be told that, despite the hearing loss, our

children won't lose what residual hearing they have, that's just not an

absolute. Nor does a Cx26 diagnosis mean a future with no hearing. Regular

hearing evaluations are a necessity (we go every 3 months, plus do some

soundbooth testing with her dispensing audiologist every so often). Proper

amplification is a must. And some form of intervention is essential.

What I like to focus on is no matter what the future holds for Hadley and her

ears, this is the most important time in her life to develop her listening,

hearing and speaking skills. Whether she loses more hearing later in her life

due to Cx26 is completely out of my (and her) control. But, I can ensure that

she is filled to the bursting point with language, sounds and knowledge that

will help her later on, regardless of what happens. This is the reason we chose

auditory-verbal therapy for our family.

Kerry

Re: information about connexin 26

This is a wonderful resource. Many thanks. I'm also looking for

information on what the prognosis is for a person who is found to

have Cx26. This site talks about how to test for it and what it is,

but doesn't give much information about the prognosis. What I'm

looking for is information on what we might expect if our children

are found to have Cx26. Do most people completely lose their hearing,

etc.?

Thanks again,

Gisgie

> Gisgie-

> Harvard's Center for Heriditary Deafness has a booklet written

specifically for families to understand the genetic causes of hearing

loss, including Cx26. You can download a copy at

http://hearing.harvard.edu/index.htm or order one online.

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]

Gisgie-

That's the big question. From what I've researched, Cx26 is still too newly

discovered for us to have much longterm research on it. People who are now in

their teens or adult years who were identified earlier in life don't go back to

do the genetic tests that are now available. Most of the longterm data

available is up to about ages 8-12 (followed from birth or early identification

of loss). When Hadley was first diagnosed almost 2 years ago with Cx26, we were

told that most Cx26 kids have stable hearing (assuming no other medical

complications). Recent studies have shown that, in a longterm study, some Cx26

kids did have a progressive loss. More recently, we've been told that Cx26 kids

who do require a CI do the best of all implanted kids (best meaning develop

clear, normal spoken language and have strong listening skills). This is all

developing information, and we just have to roll with it.

While I know we'd all like to be told that, despite the hearing loss, our

children won't lose what residual hearing they have, that's just not an

absolute. Nor does a Cx26 diagnosis mean a future with no hearing. Regular

hearing evaluations are a necessity (we go every 3 months, plus do some

soundbooth testing with her dispensing audiologist every so often). Proper

amplification is a must. And some form of intervention is essential.

What I like to focus on is no matter what the future holds for Hadley and her

ears, this is the most important time in her life to develop her listening,

hearing and speaking skills. Whether she loses more hearing later in her life

due to Cx26 is completely out of my (and her) control. But, I can ensure that

she is filled to the bursting point with language, sounds and knowledge that

will help her later on, regardless of what happens. This is the reason we chose

auditory-verbal therapy for our family.

Kerry

Re: information about connexin 26

This is a wonderful resource. Many thanks. I'm also looking for

information on what the prognosis is for a person who is found to

have Cx26. This site talks about how to test for it and what it is,

but doesn't give much information about the prognosis. What I'm

looking for is information on what we might expect if our children

are found to have Cx26. Do most people completely lose their hearing,

etc.?

Thanks again,

Gisgie

> Gisgie-

> Harvard's Center for Heriditary Deafness has a booklet written

specifically for families to understand the genetic causes of hearing

loss, including Cx26. You can download a copy at

http://hearing.harvard.edu/index.htm or order one online.

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.

------------------------------------------------------------------------------