Anyone have Waardenburg Syndrome?

carra · 09-17-2007, 06:22 PM

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.

Oddball · 09-17-2007, 06:29 PM

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.

deafskeptic · 09-17-2007, 06:36 PM

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.

Banjo · 09-17-2007, 06:37 PM

Yes, I have it too as well. :-)

shel90 · 09-17-2007, 07:21 PM

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.

deafdyke · 09-17-2007, 08:33 PM

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.

R2D2 · 09-17-2007, 11:16 PM

Quote:

Originally Posted by carra

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, 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

Welcome to AD and a belated congratulations on the birth of your daughter

***VamPyroX*** · 09-18-2007, 12:39 AM

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!

sequoias · 09-18-2007, 12:49 AM

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.

InTheGenes · 09-18-2007, 01:41 PM

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.

mshel · 09-19-2007, 12:56 AM

Quote:

Originally Posted by carra

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.

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.

Monkey · 09-19-2007, 05:25 AM

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

lilylover72 · 09-19-2007, 11:24 AM

Welcome to alldeaf and enjoy. I don't have ws.

ChelEler · 09-19-2007, 03:02 PM

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,

Congratulations on your baby!

brittany87 · 03-05-2008, 12:50 PM

....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

Sunshinelady · 03-05-2008, 01:05 PM

Hi carra,

I had some friends of WS, they lives in Germany. anyway, welcome in AD! I hope you will have fun here.

***VamPyroX*** · 03-05-2008, 05:19 PM

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.

***VamPyroX*** · 03-05-2008, 05:23 PM

Here's a website that might help you a bit...

Waardenburg syndrome - Wikipedia, the free encyclopedia

Bebonang · 03-05-2008, 09:25 PM

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.

R2D2 · 03-06-2008, 04:36 PM

Quote:

Originally Posted by VamPyroX

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.

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

lumbingmi · 03-07-2008, 08:44 PM

Hi and welcome to AD.

Dont forget to post in this thread

http://www.alldeaf.com/general-chat/...tml#post931845

***VamPyroX*** · 03-07-2008, 11:20 PM

Quote:

Originally Posted by lumbingmi

Hi and welcome to AD.

Dont forget to post in this thread

http://www.alldeaf.com/general-chat/...tml#post931845

And that thread is... ?

Giulia · 03-10-2008, 04:31 PM

Hi Carra
We are waiting for genetic results for Waardenburg syndrome. But I am not representative at all.

beekers1976 · 04-16-2008, 06:27 PM

I am brand new to the site. I have WSI, both of my boys do as well. I didn't start to loose my hearing until the last 10 years ( I am now 31) My audiologst said I have about 5 years left before I will need aides or surgery. She said that the deafness (lowtone) is caused by the hardening of the stirrup bone in the inner ear. I also am investigating my sons hearing loss. He is autistic an having problems now making out words when I speak to him. My younger son is ADHD and dyslexiic, but shows no signs of auditory issues at this time. I am so thankful to have found you all. I would love to chat anytime.
~Blessings
Becky

TweetyBird · 04-16-2008, 06:38 PM

i have waardenburg syndrome, both blue eyes and have white hair front..

marybm · 05-25-2008, 11:14 AM

I have waardenburg syndrome. I've had it since I was born. I have the white forelock of hair, both of my eyes are half green and half blue, I am half deaf, my skin is "dappled" colored.. which means it's white with lots of brown spots. A lot of people don't understand that having waardenburg syndrome isn't contagious. Or that we weren't in a fire as a child. We're just different. But I'm proud of what I look like and I think it's a very beautiful thing. I am hoping to connect with others who are just like me!!

***VamPyroX*** · 05-25-2008, 04:29 PM

Quote:

Originally Posted by marybm

I have waardenburg syndrome. I've had it since I was born. I have the white forelock of hair, both of my eyes are half green and half blue, I am half deaf, my skin is "dappled" colored.. which means it's white with lots of brown spots. A lot of people don't understand that having waardenburg syndrome isn't contagious. Or that we weren't in a fire as a child. We're just different. But I'm proud of what I look like and I think it's a very beautiful thing. I am hoping to connect with others who are just like me!!

I agree. I don't freak out when I see people like you.

I don't even freak out if it was someone NOT like you, but they're still people anyways.

I have a friend with WS who had blue eyes. However, his hearing brother had one brown and one blue eye, while his hearing sister had one blue and one brown eye.

09-17-2007, 06:22 PM	#1 (permalink)
carra Registered User Join Date: Sep 2007 Posts: 1	Anyone have Waardenburg Syndrome? 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.

09-17-2007, 06:36 PM	#3 (permalink)
deafskeptic AAACCK! I got BORGED! Join Date: Sep 2006 Posts: 2,193	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. __________________ Left ear implanted with Med-El on April 24 2007. Activated on May 9th.

09-17-2007, 07:21 PM	#5 (permalink)
shel90 Sun Whorshipper Join Date: Sep 2006 Location: A Desert Rat that has found herself in Maryland Posts: 12,237 Blog Entries: 1	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. __________________ ~Shel~

09-18-2007, 12:39 AM	#8 (permalink)
*VamPyroX* bloody phreak from hell Join Date: Feb 2003 Location: Hell Posts: 25,495	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! __________________ Check out my city... CLICK HERE! (If you already visited yesterday, visit again today!)

09-18-2007, 12:49 AM	#9 (permalink)
sequoias Swifty the Rat Join Date: Jun 2004 Location: The Evergreen State Posts: 10,776	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. __________________ created by seq

Today
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09-17-2007, 06:29 PM	#2 (permalink)
Oddball Wacky Oddball Join Date: Apr 2003 Location: Moon Posts: 3,088	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.

09-17-2007, 06:37 PM	#4 (permalink)
Banjo Mr. Movie Guy Join Date: Mar 2003 Location: Ontario, Canada Posts: 4,817 Blog Entries: 1	Yes, I have it too as well. :-)

09-17-2007, 08:33 PM	#6 (permalink)
deafdyke So NOT a Princess! Join Date: Mar 2003 Location: Trebekistan Posts: 6,273	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.

09-18-2007, 01:41 PM	#10 (permalink)
InTheGenes Intolerant of Intolerance Join Date: Oct 2006 Location: Northern VA (near DC) Posts: 230	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.

09-19-2007, 05:25 AM	#12 (permalink)
Monkey Registered User Join Date: Sep 2007 Posts: 15	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

09-19-2007, 11:24 AM	#13 (permalink)
lilylover72 I love purple! Join Date: Mar 2006 Location: USA Posts: 2,719	Welcome to alldeaf and enjoy. I don't have ws.

09-19-2007, 03:02 PM	#14 (permalink)
ChelEler Registered User Join Date: Mar 2003 Location: Wyoming Posts: 5,514	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, Congratulations on your baby! __________________ --ChelEler--

03-05-2008, 12:50 PM	#15 (permalink)
brittany87 carebear87 Join Date: Dec 2007 Location: fort worth texas Posts: 3 Blog Entries: 1	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

03-05-2008, 01:05 PM	#16 (permalink)
Sunshinelady I am in area SF Join Date: Sep 2006 Location: California Posts: 1,406	Hi carra, I had some friends of WS, they lives in Germany. anyway, welcome in AD! I hope you will have fun here. __________________ The laughter is the best medicine.

03-05-2008, 05:19 PM	#17 (permalink)
*VamPyroX* bloody phreak from hell Join Date: Feb 2003 Location: Hell Posts: 25,495	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. __________________ Check out my city... CLICK HERE! (If you already visited yesterday, visit again today!)

03-05-2008, 05:23 PM	#18 (permalink)
*VamPyroX* bloody phreak from hell Join Date: Feb 2003 Location: Hell Posts: 25,495	Here's a website that might help you a bit... Waardenburg syndrome - Wikipedia, the free encyclopedia __________________ Check out my city... CLICK HERE! (If you already visited yesterday, visit again today!)

03-05-2008, 09:25 PM	#19 (permalink)
Bebonang Registered User Join Date: Nov 2006 Location: Manitoulin Island on Lake Huron in Canada Posts: 943	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.

03-07-2008, 08:44 PM	#21 (permalink)
lumbingmi Invigorated Join Date: Aug 2006 Posts: 2,888	Hi and welcome to AD. Dont forget to post in this thread http://www.alldeaf.com/general-chat/...tml#post931845 __________________ "When things get tough, the tough get going"

03-10-2008, 04:31 PM	#23 (permalink)
Giulia Registered User Join Date: Mar 2008 Location: Paris, France Posts: 48	Hi Carra We are waiting for genetic results for Waardenburg syndrome. But I am not representative at all. __________________ Giulia, Single Sided Deaf, BAHA hearing aid.

04-16-2008, 06:27 PM	#24 (permalink)
beekers1976 Registered User Join Date: Apr 2008 Posts: 1	I am brand new and have WS I am brand new to the site. I have WSI, both of my boys do as well. I didn't start to loose my hearing until the last 10 years ( I am now 31) My audiologst said I have about 5 years left before I will need aides or surgery. She said that the deafness (lowtone) is caused by the hardening of the stirrup bone in the inner ear. I also am investigating my sons hearing loss. He is autistic an having problems now making out words when I speak to him. My younger son is ADHD and dyslexiic, but shows no signs of auditory issues at this time. I am so thankful to have found you all. I would love to chat anytime. ~Blessings Becky

04-16-2008, 06:38 PM	#25 (permalink)
TweetyBird Live, Laugh & Love Join Date: Dec 2003 Location: AlAbAmA Posts: 20,901	i have waardenburg syndrome, both blue eyes and have white hair front..

05-25-2008, 11:14 AM	#26 (permalink)
marybm Registered User Join Date: May 2008 Location: Kentucky Posts: 1	I have waardenburg syndrome. I've had it since I was born. I have the white forelock of hair, both of my eyes are half green and half blue, I am half deaf, my skin is "dappled" colored.. which means it's white with lots of brown spots. A lot of people don't understand that having waardenburg syndrome isn't contagious. Or that we weren't in a fire as a child. We're just different. But I'm proud of what I look like and I think it's a very beautiful thing. I am hoping to connect with others who are just like me!!