Re: Charge Syndrome vs. Goldenhar Syndrome/Are there other deaf/hard of hearing

[Guest guest]

Hi Chip - let's see if I can help:

> Hey guys,

> Whazzup!? I got some medical questions to ask you guys, ever

since that here on this list brought up Goldenhar Syndrome,

right?

> I did some research of Goldenhar Syndrome online, and I never

seen any pics of GS, of course I saw a Yahoo Group with a young girl,

but she doesn't look like she have any disability ya know. I was

wondering, how are Charge and Goldenhar alike/similiar to each other?

What does Goldenhar Syndrome have in common with Charge Syndrome? Cuz,

when I did some research online, I don't see any similiarities except

some differences on the face, hearing loss, vision loss, and I think

it said something about growth problem? Not sure yet, is that also

common in GS as in Charge Syndrome?

Chip - yes you picked up ont eh overlap betweec CHARGE and Goldenhar.

And you figured out that people with Goldenhar don't look different

from other people. I am not aware of people with Goldenhar having

growth or other hormonal issues. Another name for Goldenhar that

might give you more on a serch is " hemifacial microsomia. "

> Do you know any links I can look up, I'm just curious about

learning about other disorders that is related to hearing

loss/deafness disorders. By the way, are there disorders beside Charge

Syndrome that got hearinig loss disorder too?

Before I got into CHARGE, I was doing a " deaf blind study " looking at

different conditions whihc could cause both hearing loss and vision

loss. There were over 100 conditions on the list. Everything from

congenital rubella to Usher syndrome to Down syndrome. And that list

probalby didnt' cover it all. So yes, there are l=many, many ways to

get combined hearing loss and vision loss. And even ore that could

give you just hearing loss.

Cuz, I did had some deaf/h.h. friends in the past that look different

than me....they didnt look like they got CHARGE, but they got

something else (there face are different, and body is also kind of

skinny too. Well, I had another friend who is h.h. like me, and he got

absent ears, just the floppy cartlidge of it, that's all. What is that

called?)

That might be Treacher syndrome. Or Goldenhar - but in G,

it's usually only one ear that is affected. Or it might be something

else altogether.

I even seen some deaf/h.h. children that got floppy cartlidge of

their former/absent ears, got slanted eyes/eyelids, and I guess the

nose and/or mouth is also a bit different too. Do you know what is the

name of that disorder?

> Dang, learning about a bunch of disorders always seem to be

interesting to me! I guess that ever since I 1st found out about

Charge Syndrome long time ago, and about Cystic Fibrosis (had a friend

with CF, and she was hard of hearing like me, and she passed away in

'98, she would of been around Heidi's age if she was alive now), I

became so interest in learning about other disorders that included

hearing loss ya know. I know some websites like " Funny Face " or

" Friendly Face " , and some others, cool huh? Anyway, I'll stop here for

now. Lemme know what you can find, thanks!

> Ol' Chipper >

Chip - this is all very complicated. I went to school for a really

long time jus tot learn small parts of it. But if you have other

specific quesitons, I'll try to answer.

Meg

Meg Hefner MS

Genetic Counselor

St. Louis MO