RE: genetics and hearing loss

[Guest guest]

I am Italian and my husband is Sephardic Jewish. We had Kara tested for

Connexin 26 and it is positive. During my research on the gene, I found out

that up to 4% of Italians carry this recessive gene and 3% of the rest of

the population. Since my husbands ancestry is most likely in the

Mediterranean from centuries ago, I assume that there is the link.

Most of the testing for Connexin hearing losses are being done in Italy by

Italian doctors. I originally thought it was because of the high incidence

for carrying the gene in Italians and the availability of people to test.

Many of the kids in Kara's class are Italian. There are two Jewish kids,

two Spanish kids, one Indian child. (I am not including the kids who lost

their hearing due to meningitis, other sickness or have a syndromatic

hearing loss, only those with genetic losses.) In the whole preschool

program of 70 children, there are no Orientals and two black children. I

asked the principal about this, regarding the prevalence of hearing loss

among certain groups and she said that the school population is just

symbolic of the population on Long Island. After reading about connexin 26

and its occurrence among certain groups, I wonder about this.

Regarding genetic testing, I wanted to know why Kara had a loss. She was

diagnosed in April 99. We had her tested in August 99 and got the results

in November 99. We kept blaming ourselves for her loss. Was I too old?

Did I take cold medicine when I was pregnant? Did she fall off the bed and

hit her head? Having her tested really helped us in the process.

I spoke to other parents in the class and they don't seem interested. One

said that she is not having any more kids so it is not important to her. I

needed to know for my acceptance.

Diane, Kara's mom, 3yo, HOH

Re: A Double Edged Sword.....

> Is it common that the ENT and Audiologists are not

>interested really in cause....they seem to not

>question " why " at all.....what if it is significant

to >his future medical conditions?

I haven't posted in quite a while but am still

following the list and wanted to respond to this.

My son, , was diagnosed with bilateral, mild

to moderate, sensorineural hearing loss in August.

His ENT did order a CT Scan and genetic testing, but

pretty much seems uninterested in the cause. He said

we may never know the cause. The person who seems

more interested in finding a possible cause is the

genetics doctor (we are seeing an ENT and genetics

doctor at Children's Hospital in Philadelphia).

's CT scan showed a SLIGHTLY enlarged

vestibular aqueduct in his left ear only, but he

suffers from hearing loss in both ears. The ENT just

blew by this saying it could be indicative of other

problems in his ear and isn't going to pursue any

further testing. The genetics doctor seems more

interested in finding a possible cause. My DH is

Jewish and he says there's a higher incidence of

hearing loss in Ashkenazi Jews (which my DH's

decendents are). Ben is being tested to see if he

carries the Conexion 23 (?) gene which has been

identified in people with hearing loss. If he does,

then he and possibly us will be undergoing further

genetic testing since this would have an impact on his

future and the future of any children he might have.

Terri

__________________________________________________

[Guest guest]

Well I think after reading all the posts over the last week or so I am going to

look into some additional testing for . I have found it interesting to

read that

the italian background may be a genetic link to Connexin 26 as my ex husband

('s Dad) is italian.

I guess really what it comes down to is I am just not sastified with the

knowledge we have there are so many little things with and some how I

just feel they

must add up some how.

Thank you to everyone for your wealth of info and support!

Happy New Year!!!

~ and 's Mom

DGIORDANO@... wrote:

> I am Italian and my husband is Sephardic Jewish. We had Kara tested for

> Connexin 26 and it is positive. During my research on the gene, I found out

> that up to 4% of Italians carry this recessive gene and 3% of the rest of

> the population. Since my husbands ancestry is most likely in the

> Mediterranean from centuries ago, I assume that there is the link.

>

> Most of the testing for Connexin hearing losses are being done in Italy by

> Italian doctors. I originally thought it was because of the high incidence

> for carrying the gene in Italians and the availability of people to test.

>

> Many of the kids in Kara's class are Italian. There are two Jewish kids,

> two Spanish kids, one Indian child. (I am not including the kids who lost

> their hearing due to meningitis, other sickness or have a syndromatic

> hearing loss, only those with genetic losses.) In the whole preschool

> program of 70 children, there are no Orientals and two black children. I

> asked the principal about this, regarding the prevalence of hearing loss

> among certain groups and she said that the school population is just

> symbolic of the population on Long Island. After reading about connexin 26

> and its occurrence among certain groups, I wonder about this.

>

> Regarding genetic testing, I wanted to know why Kara had a loss. She was

> diagnosed in April 99. We had her tested in August 99 and got the results

> in November 99. We kept blaming ourselves for her loss. Was I too old?

> Did I take cold medicine when I was pregnant? Did she fall off the bed and

> hit her head? Having her tested really helped us in the process.

>

> I spoke to other parents in the class and they don't seem interested. One

> said that she is not having any more kids so it is not important to her. I

> needed to know for my acceptance.

>

> Diane, Kara's mom, 3yo, HOH

>

> Re: A Double Edged Sword.....

>

> > Is it common that the ENT and Audiologists are not

> >interested really in cause....they seem to not

> >question " why " at all.....what if it is significant

> to >his future medical conditions?

>

> I haven't posted in quite a while but am still

> following the list and wanted to respond to this.

>

> My son, , was diagnosed with bilateral, mild

> to moderate, sensorineural hearing loss in August.

> His ENT did order a CT Scan and genetic testing, but

> pretty much seems uninterested in the cause. He said

> we may never know the cause. The person who seems

> more interested in finding a possible cause is the

> genetics doctor (we are seeing an ENT and genetics

> doctor at Children's Hospital in Philadelphia).

>

> 's CT scan showed a SLIGHTLY enlarged

> vestibular aqueduct in his left ear only, but he

> suffers from hearing loss in both ears. The ENT just

> blew by this saying it could be indicative of other

> problems in his ear and isn't going to pursue any

> further testing. The genetics doctor seems more

> interested in finding a possible cause. My DH is

> Jewish and he says there's a higher incidence of

> hearing loss in Ashkenazi Jews (which my DH's

> decendents are). Ben is being tested to see if he

> carries the Conexion 23 (?) gene which has been

> identified in people with hearing loss. If he does,

> then he and possibly us will be undergoing further

> genetic testing since this would have an impact on his

> future and the future of any children he might have.

>

> Terri

>

> __________________________________________________

>

[Guest guest]

In a message dated 1/1/2001 8:34:24 AM Eastern Standard Time,

DGIORDANO@... writes:

> I spoke to other parents in the class and they don't seem interested. One

> said that she is not having any more kids so it is not important to her. I

> needed to know for my acceptance.

>

>

Hi Diane,

Even though we have no clue why Jake is deaf and why he is the rare one to

have auditory neuropathy I hope to someday find out, or at least have him

find out if I am gone. It really doesn't matter to me why because I am not

having more kids either......BUT I have a hearing son and Jake who need to

know if it is a genetic problem, because they can have deaf children if it

is. I'd just like for them to know that the chance is increased of them

having a deaf child if it was genetic.

Does anyone else feel that way?

Elaine

Cueing Mom to Jake/Auditory Neuropathy/Clarion S-Series 2-99

[Guest guest]

DGIORDANO@... wrote:

>I spoke to other parents in the class and they don't

>seem interested. One said that she is not having any

>more kids so it is not important to her.

But, it could be very important to that child when it

comes time for them to have children don't you think?

That's really the only reason we are pursuing the

genetic testing on . If he does, indeed,

carry

the Connexion 26 gene then he could pass this onto his

children and could have deaf children if his wife also

carries the gene. I think that's important to know,

but that's just me.

Terri

__________________________________________________

[Guest guest]

DGIORDANO@... wrote:

>I am Italian and my husband is Sephardic Jewish.

I forgot to mention in my last post that I am of

Italian descent. My grandmother and her family came

over from Italy. Geez, Italian and Ashkenazi Jews.

The worst combination!

Terri

__________________________________________________

[Guest guest]

<<I'd just like for them to know that the chance is

increased of them

having a deaf child if it was genetic.

Does anyone else feel that way?>>

Yes, that too was our driving force. I cannot have any

more kids but we wanted to find a genetic cause so our

3 kids would know if there was a chance of them having

deaf children also. is our oldest and the

only one hearing impaired.

--- beat4girl@... wrote:

> In a message dated 1/1/2001 8:34:24 AM Eastern

> Standard Time,

> DGIORDANO@... writes:

>

>

> > I spoke to other parents in the class and they

> don't seem interested. One

> > said that she is not having any more kids so it is

> not important to her. I

> > needed to know for my acceptance.

> >

> >

>

> Hi Diane,

> Even though we have no clue why Jake is deaf and why

> he is the rare one to

> have auditory neuropathy I hope to someday find out,

> or at least have him

> find out if I am gone. It really doesn't matter to

> me why because I am not

> having more kids either......BUT I have a hearing

> son and Jake who need to

> know if it is a genetic problem, because they can

> have deaf children if it

> is. I'd just like for them to know that the chance

> is increased of them

> having a deaf child if it was genetic.

>

> Does anyone else feel that way?

> Elaine

>

> Cueing Mom to Jake/Auditory Neuropathy/Clarion

> S-Series 2-99

>

>

> [Non-text portions of this message have been

> removed]

>

>

=====

Our Family Page:

http://johansenfamily.homestead.com/

Pictures of our 2000 Christmas Lights:

http://www.geocities.com/huber0105/

**********************************************************

As of today 94 firefighters have died in the line of duty since Jan.1,2000. May

they watch over those of us who continue to fight the dragon, and may they be

waiting at the gates for those brothers and sisters that are also called home.

__________________________________________________