Anyone have Waardenburg Syndrome?

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carra

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Hi, I'm new to this site. My 13 week old daughter has a severe sensorineural hearing loss in one ear. I'm thinking we have Waardenburg Syndrome as my daughter also has a white forelock (a small section of white hair at her forehead when the rest of her hair is black) and I have sectoral heterochromia (2 different coloured eyes, in sections - bright blue and brown).

Does anyone else on this site have Waardenburg Syndrome?

Thanks.

Carra.
 
Yep, few old timers were AD members who have WS. They are not frequent to here anymore. I believe other three still around have WS.

I've met tons of WS people all over the US. They are interesting people.
 
Welcome to the boards. I wish you a long and pleasant stay here.

Anyway, one of the regular posters (R2D2) in the cochlear implant section has Waardenburg's Syndrome.
 
I have worked with students and had friends with WS. Yea, there are some AD members here that have it. Hopefully they will post here. :)
 
Welcome! Yes, we have quite a few members with WS. Its pretty common overall in the Deaf community. It's great that you're being really proactive, even thou she "only" has unilateral loss. Kids with unilateral loss tend to be really "maxstreamed" (ie mainstreamed to the max with even less exposure to the Deaf community, then someone who's hoh would get)
One thing to be on the lookout for, is the possibilty of additional hearing loss.
Be very viligant about your daughter being followed. It's possible that she may have a "hoh loss" in her other ear. There are some losses where an ABR can be inaccuate, but the loss can be picked up on more tradtional auditremy.
Not sure how common unilateral vs bilateral loss is, in WS. Maybe someone else knows.
 
carra said:
Hi, I'm new to this site. My 13 week old daughter has a severe sensorineural hearing loss in one ear. I'm thinking we have Waardenburg Syndrome as my daughter also has a white forelock (a small section of white hair at her forehead when the rest of her hair is black) and I have sectoral heterochromia (2 different coloured eyes, in sections - bright blue and brown).

Does anyone else on this site have Waardenburg Syndrome?

Thanks.

Carra.
Click to expand...

Yep, based on what you've described, I'd say you and your daughter both have Waardenburgs. I have it accompanied by a streak of white hair in black hair (people think I've dyed it in) and I was born with severe/profound deafness. My father, who had normal hearing also had one blue eye and one brown eye just like you. He was dark skinned, so the different coloured eyes really stood out on him.

You may also have noticed that the eyes can be set further away from the bridge of the nose than usual. That is another feature of Waardenburgs.

You might want to go and see a genetic specialist to become more informed. There are different types of Waardenburgs, some of which have additional features. The more severe features are fortunately, very rare.

It's also a dominant condition, although my daughter doesn't have it. My brother and sister have it, but have normal hearing but lots more white hair than me :giggle:

Welcome to AD and a belated congratulations on the birth of your daughter :)
 
I have a few friends who have it. I have one friend who has both blue eyes. However, one sibling has both brown eyes and another sibling has one brown and one blue eye. Heh!
 
I don't have it but I've seen and also met some people with waardenburg syndrome, including a black guy with his son who both have it. a few members on alldeaf have it, too. :)
 
Several members of my extended family (including my deaf 1.5 year old nephew) have WS. Admittedly, I didn't know much about it until my nephew was born... but there's a good deal of information out there about it, as I found out when I did my own research.
 
Waardenburg syndrome

carra said:
Hi, I'm new to this site. My 13 week old daughter has a severe sensorineural hearing loss in one ear. I'm thinking we have Waardenburg Syndrome as my daughter also has a white forelock (a small section of white hair at her forehead when the rest of her hair is black) and I have sectoral heterochromia (2 different coloured eyes, in sections - bright blue and brown).

Does anyone else on this site have Waardenburg Syndrome?

Thanks.

Carra.
Click to expand...

Wow, I too have waardenburg syndrome. It's not that common so whenever I 'hear' (haha)-know about another with it I introduce myself. I would love to chat with you more.:deaf::h5:
 
Yep Im another one who has it... I have the white hair on my forehead and my eyes are wider as in further away from the nose if you know what I mean
 
:welcome: I don't have WS and I don't think I have met anyone in person with that WS. I would love to meet someone who has it.

I'm surprised to see how many AD'ers have it. Wow... Keep them coming and keep on posting.

Again, :welcome: Congratulations on your baby! :thumb:
 
i have waardenburg

....and im pregnant ..... sounds to me like it is waardenburg syndrome. I do have the white forlock But i die my hair so u cant tell. I wear hearing aids to for my hearing loss..... maybe you guys do have it.... seems very likely
 
Hi carra,

I had some friends of WS, they lives in Germany. anyway, welcome in AD! I hope you will have fun here.
 
Are you asking if your kid will get it too?

I don't know the genetics behind it.

I do have a friend who is deaf and his eyes are bright blue. He has a brother and a sister with brown and blue eyes, but in the opposite eyes for each other. They're hearing. I don't know if they have it as well.
 
:welcome: to AllDeaf forum. I am surprise that Waardenburg syndrome has white on the forhead and have blue and brown eye. Also I did not know that syndrome can cause hearing loss. Wow. That is new to me. Anyway, hope you can learn from us and enjoy all the threads here. Have fun chatting with some members who have Waardenburg syndrome. I don't have WS, but the topic is very interesting. :wave:
 
VamPyroX said:
Are you asking if your kid will get it too?

I don't know the genetics behind it.

I do have a friend who is deaf and his eyes are bright blue. He has a brother and a sister with brown and blue eyes, but in the opposite eyes for each other. They're hearing. I don't know if they have it as well.
Click to expand...

Yes, you can have Waardenburgs and be hearing. My father had one brown eye and one blue eye and was hearing.
 
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