RE: hearing loss and hair loss

[Guest guest]

Hi Guys,

Were Jewish, A Big Mix, English, French, German, Russian. We were asked

to get tested for connexion 26 as well. They said Eastern European Jews to

us but maybe I miss understood.

Sheri

[Guest guest]

TO SHERI;

I HAVE DONE SOME RESEARCH IN THE AREA OF CONNEXIN 26 AND HEARING LOSS. HERE

IT IS: THERE ARE TWO FORMS OF HEARING LOSS RELATED TO CONNEXIN 26 GENES.

IF THE GENE IS IN ONE LOCATION IT CAUSES A POSSIBLE PROGRESSIVE HEARING

LOSS. THIS IS THE GENE RESPONSIBLE FOR HEARING LOSSES IN ASHKENAZIE JEWS

WHICH I SUSPECT YOU ARE REFERRING TO. CONNEXIN 26 IS ALSO THE CAUSE FOR

LOSS IN MANY INDIVIDUALS OF MEDITERRANEAN AND ENGLISH AND IRISH DESCENT.

THIS LOSS IS GENERALALLY NOT PROGRESSIVE.

THE GENE CAN BE LOCATED IN TWO SPOTS, FOR LACK OF A BETTER TERM,(I'M AN

ACCOUNTANT NOT A DR) YOU DID NOT MIS UNDERSTAND THE DR. OUR DR TOLD US TO

GET TESTED BECAUSE MY HUSBAND IS JEWISH. HOWEVER HE IS SEPHARDIC.

Re: hearing loss and hair loss

From: SDunnstern@...

Hi Guys,

Were Jewish, A Big Mix, English, French, German, Russian. We were asked

to get tested for connexion 26 as well. They said Eastern European Jews to

us but maybe I miss understood.

Sheri

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

[Guest guest]

Diane,

This may be totally off base about the hair loss, but I will suggest it just in

case. Some children who have hearing loss and vestibular systems that are

compromised

actually do some crawling on their back. The result of the crawling on their

back is that as they scoot along on the carpet, the back of the head is rubbed.

For some

children who do this, the hair can come out. However, in the children that I've

known who have done this I don't recall that the hair that was left actually

looked

unhealthy. Just sparse. But the parents were relieved that they found the

scooting on the back was the cause.

I hope you figure this out. Have thyroid tests been done or suggested?

Sometimes the thyroid can affect hair loss.

Keedy

keedy@...

[Guest guest]

Can you let me know more about this gene??? Any sites ect, as my ex-husband

is Italian.

Thanks ~ and 's Mom

>Hi and Sal;

>

>My husband and I think that connexin 26 is the gene we carry based on info

>that we read. I see from your last name that you are Italian. So am I. I

>have read that about 4% of Italians carry this gene. My husband is

>Egyptian. The gene is also found in those of Mediterranean descent.

>

>We will be involved in two studies. One through the University of Iowa for

>Kara only and one through Gaulledette for the three of us.

>

>Do you have any other children and has hearing loss ever shown up in your

>family before?

>

>You are lucky to catch Ben's loss so early. Is testing for infants madatory

>in your state?

>

> Re: hearing loss and hair loss

>

>

>

>

>

>>We don't know the source of her loss, but my husband, , and I think

>>that we are recessive gene carriers. We plan on getting Kara tested soon.

>

>Hi, Diane, I'm the mother of Ben, an almost 1-year-old with a

>moderate/moderately-sever bilateral sensorineural hearing loss, and we just

>found out it's due to connexin 26. My husband and I also found out we are

>carriers of this mutated gene, and my daughter is a carrier as well. They

>only discovered this gene two years ago, so there's not a lot of

>information about it, except it's the most common cause of genetic deafness.

>

>Good luck,

>

>Stefanie

>

>

>

>---------------------------

[Guest guest]

On the connection 26, The audiologist that reviewed 's test results

was the one that suggested the testing because has a mild to moderate

Low loss like your daughter. This seems to be the trademark of the gene. I

would imagine that 's loss started earlier or is progressing faster

because her speech is very delayed. This is starting to freak me out, it

seems as if we understand more about medicine then a lot of the doctors we

are seeing. It's really hard to teach a doctor something new about a subject

they have a lot of experience in.

Something else was brought to my attention the other day. A local

audiologist commented to me that he had not seen her kind of loss for years,

the last group of girls he saw with this type of loss was 30 years ago when a

bunch of pregnant mom's got German measles in their 1st trimester. Any

comments on this?

[Guest guest]

Hey, Diane,

Yes, my husband is all Italian; I'm half Ukranian, half English and French.

I have also read that 4% of Italians carry the gene, but it's 3% in the

general population. I think it's pretty amazing that, of all the possible

gene mutations one can have, my husband and I share the same one. I keep

thinking we ought to play the lottery!

>We will be involved in two studies. & nbsp; One through the University of

>Iowa for Kara only and one through Gaulledette for the three of us.

Our family will be participating in the Gaullaudette study.

>

>Do you have any other children and has hearing loss ever shown up in your

>family before?

Yes, I have a 4-year-old daughter who is a connexin 26 carrier; she also

happens to have a mild loss in the lower frequencies, but they don't think

it's because of connexin 26 (oh, goody, something else!), so I'm trying to

figure out that one. The only reason we caught it is because of her

brother's loss; her speech and language skills are excellent. There is no

known history of hearing loss in either of our families.

>

>You are lucky to catch Ben's loss so early. & nbsp; Is testing for infants

>madatory in your state?

It is now (as of November 1 of last year); I happened to give birth at a

teaching hospital, where they have been doing routine screening for several

years. I wasn't even aware it was being done, until they told me he'd

failed it; it was confirmed with an ABR at one month. I know we are very

lucky, but it didn't feel like it the day I found out. Now I'm glad,

because he's received services from the get-go; also, I never knew him as

anything other than HoH, so it wasn't like I'd already known him for a year

or more as a " hearing " child, only to find out he wasn't. For me, I think

that's been easier (relatively speaking, of course!)

[Guest guest]

Diane, you wrote:

>I HAVE DONE SOME RESEARCH IN THE AREA OF CONNEXIN 26 AND HEARING LOSS. HERE

>IT IS: THERE ARE TWO FORMS OF HEARING LOSS RELATED TO CONNEXIN 26 GENES.

>IF THE GENE IS IN ONE LOCATION IT CAUSES A POSSIBLE PROGRESSIVE HEARING

>LOSS. THIS IS THE GENE RESPONSIBLE FOR HEARING LOSSES IN ASHKENAZIE JEWS

>WHICH I SUSPECT YOU ARE REFERRING TO. CONNEXIN 26 IS ALSO THE CAUSE FOR

>LOSS IN MANY INDIVIDUALS OF MEDITERRANEAN AND ENGLISH AND IRISH DESCENT.

>THIS LOSS IS GENERALALLY NOT PROGRESSIVE.

I am really curious about this, since the geneticist I spoke with said

nothing about whether the mutations my husband and I carry are likely to be

progressive. Where can I get more information about this?

Thanks,

Stefanie

[Guest guest]

>

>

>Can you let me know more about this gene??? Any sites ect, as my ex-husband

>is Italian.

>Thanks ~ and 's Mom

I think someone already answered this, but I have just gone to a search

engine and typed in " connexin 26 " and started reading articles. Also,

check with Gallaudette University; they're doing a research project on it

and may be able to give you info. I spoke with a geneticist to get

whatever info I now have; they don't know much, as it's a relatively new

discovery.

Stefanie