Anyone have Waardenburg Syndrome?

Hi Carra
We are waiting for genetic results for Waardenburg syndrome. But I am not representative at all.
 
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
 
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!!
 
marybm said:
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!!
Click to expand...
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.
 
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...

I do have Waardenburg Syndrome and I am not proud of. In fact, I need to learn to accept who I am. Good thing, a lot of people out there dont know nothing about WS. Also, my daughter have WS and both bright blue eyes. Today, I am 30 years old, I do not have white forelock. I have one brown and one blue eyes. After my daughter was born, I found out she is totally deaf. I am deaf myself but I can speak very well. I found out I have Ws when I was 19 years old and I do not want to learn anything about WS. When my daughter was 10 month old, I noticed her face so I thought she may have Ws, too. My husband took her to genetic doctor so she have Ws as well. I decided I research more about WS myself while I was pregnant with second child about 6 years ago. I am pretty shock, there is a 50/50 chance that a child of an individual with WS will also have the syndrome. After my daughter was born, she doesnt have WS at all. She is normal hearing and will not pass it on. My mother told me that my real father have WS but he is normal hearing. I dont know nothing about my father since he dont want to do anything from me when I was a little girl.
 
shannaofg2 said:
I do have Waardenburg Syndrome and I am not proud of. In fact, I need to learn to accept who I am. Good thing, a lot of people out there dont know nothing about WS. Also, my daughter have WS and both bright blue eyes. Today, I am 30 years old, I do not have white forelock. I have one brown and one blue eyes. After my daughter was born, I found out she is totally deaf. I am deaf myself but I can speak very well. I found out I have Ws when I was 19 years old and I do not want to learn anything about WS. When my daughter was 10 month old, I noticed her face so I thought she may have Ws, too. My husband took her to genetic doctor so she have Ws as well. I decided I research more about WS myself while I was pregnant with second child about 6 years ago. I am pretty shock, there is a 50/50 chance that a child of an individual with WS will also have the syndrome. After my daughter was born, she doesnt have WS at all. She is normal hearing and will not pass it on. My mother told me that my real father have WS but he is normal hearing. I dont know nothing about my father since he dont want to do anything from me when I was a little girl.
Click to expand...

I have Waardenburg's syndrome. I accepted myself a long, long time ago. I knew that I had it when I was a child.

It's nothing to be ashamed of.
 
You know what? I am probably prejudiced about folks with WS... in fact, I expect them all to be ultra-intelligent since that has been my experience so far! It is indeed nothing to be ashamed of.
 
:wave: everybody
We suspect that I have WS. We are waiting for genetics results (my geneticist is not fast at all :lol::roll: ). I have only a single sided deafness and my mother has had a forelock in her hair.
I cross my fingers to know more about my unilateral deafness.
 
Last edited:
My grandson has WS. No white forelock, both eyes same color. He is total deaf, no auditory nerve. WS confirmed genetically. Neither of his parents have the WS gene so it must be a mutation in my grandson. He also has some muscular problems. He is only 2.5 years old so we do not yet know if he has any other limitations or if he will out grow the muscular limitations he has. We are all learning ASL and hope he will soon start catching on to it as well.
 
I started WS when I was 21 years old. None of my hearin' family have it, except me. I am the only deaf in the family.

I think I am startin' to like white forlock. :giggle:
 
Banjo said:
I have Waardenburg's syndrome. I accepted myself a long, long time ago. I knew that I had it when I was a child.

It's nothing to be ashamed of.
Click to expand...

You are right, it is nothing to be ashamed of. I am glad you knew all along when you were a child. I didnt know anything about it when I grow up because I havent been around my father. I started to see a few of people who have WS at different deaf schools which it bugs me. I asked one of my teacher to find out why some people looks like me and he explained to me. I thought it was impossible. That is how I found out when I was 19 years old.
 
HoHPete said:
My grandson has WS. No white forelock, both eyes same color. He is total deaf, no auditory nerve. WS confirmed genetically. Neither of his parents have the WS gene so it must be a mutation in my grandson. He also has some muscular problems. He is only 2.5 years old so we do not yet know if he has any other limitations or if he will out grow the muscular limitations he has. We are all learning ASL and hope he will soon start catching on to it as well.
Click to expand...

I dont think your son have WS because of what you said about his parents. One of the parent who must have WS and it will pass on to a child by 50/50 chance.That is how it works. For example, my youngest daughter, who dont have Ws and she will not pass it on to her children and grandchildren in the future. I hope it helps.
 
Hello, I have some friends from university with Waardenburg syndrome, so I know what it is.
 
Herzlich Willkommen :)

Yes I have some friends who have WS. One of my friends have one brown and one blue eye. Most of them have white on front of their hair (near forehead).


Banjo, I didn't notice at your avator that you are also WS as well. It didn't show very much on you?



 
Liebling:-))) said:
Herzlich Willkommen :)

Yes I have some friends who have WS. One of my friends have one brown and one blue eye. Most of them have white on front of their hair (near forehead).


Banjo, I didn't notice at your avator that you are also WS as well. It didn't show very much on you?
Click to expand...

Look at my eyes, you can see that it is brown and blue.
 
Jiro said:
what about some strip of white hair?
Click to expand...

The forelock isn't always present in individuals but since he has really short hair, I guess he will be along shortly.....
 
Back
Top