Waardenburg's Syndrome

LuciaDisturbed

LuciaDisturbed

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I don't think I've got Waardenburg's but about 6 or 7 years ago I noticed I have a white spot of hair when I shaved my hair to like 1/8th of an inch. It isn't a thick chunk of white hair, more like there's about 20 strands of white hair mixed in with my black hair, not noticable at all unless I've got my hair cut that short. It's on the side of my head, not at the front like most of those who have WS. I've never noticed it before, but growing up I always had a white strand here and there and I thought nothing of it. But lately I am starting to see more white strands of hair, and what looks like another smaller spot of white hair near the front. My deafness is not caused by Waardenburg, though - I was born hearing and lost my hearing due to too many infections. I have no other Waardenburg features. I'm just wondering. And for the record, I am 26 years old.

MODS: I know there is a thread regarding Waardenburg Syndrome, but that thread is very old and I don't want it merged with this one, please.
 
It's probably Waardenburg's syndrome. Often, people with the syndrome won't start greying till puberty and beyond. I have the syndrome and I didn't get any white hair strands till I was around 13 or 14.
 
That is interesting! I always thought the white hair was evident from birth. I havent met anyone who has experienced what u are experiencing, Lucia.

Maybe u can go to your dr and have him check it out for u?
 
I also thought the gray hairs were present at birth.

I know an adult CI user who has Waardenburg's Syndrome who started noticing a few strands of white hair when she was 8 or 9 years old.
 
Lucia, if you're before 30 years of age.. it could be, maybe not. Premature graying is one characterstic of Waardenburg's. But it's a common & widespread trait so it isn't an effective indicator if it appears to be the sole symptom.

White spots ARE a good indicator of Waardenburg's though. The white spots can be anywhere on the body.. the forehead spot just happens to be a common & most visible location. Besides you don't usually see other parts of other people's bodies anyways.. ;)

Even so.. the white spot could be due to other things such as vitiligo or piebaldism.. those don't have anything to do with deafness. (yes I know piebald is used to describe the Waardenburg white spots/forelock but it is also the name of independent genes that cause white spotting on people but doesn't cause deafness)

It helps to look at the family tree, if there are direct blood relatives with either one or more of those: premature graying, deafness, white spots, different colored eyes(heterochromia iridum). If those are present in other relatives then it becomes more likely- especially if any relatives have heterochromia.. that's often considered a very strong sign of Waardenburg's.


I have Waardenburg's Type II- deaf, different colored eyes, premature graying. Wasn't born with any white spots but post puberty acquired what looks like a small white forelock with a streak going off to one side. My beard & moustache would be 99% white already if I let it grow out even though I'm only 37 now.
 
Hi Banjo & other Waardenburg folks, I'm curious.. do you have any problems with vision? Sensitivity to strong light or sunlight? Have silly sun grins whenever it's sunny outside?
 
cathartes said:
Hi Banjo & other Waardenburg folks, I'm curious.. do you have any problems with vision? Sensitivity to strong light or sunlight? Have silly sun grins whenever it's sunny outside?
Click to expand...

I'm very sensitive to bright sunlight. And light in general too. I can't fall asleep if I can see the light peeking through a closed door, even with my eyes shut. I can't fall asleep if there's a night light in the room.

My eyes are naturally bright blue.
 
cathartes said:
Hi Banjo & other Waardenburg folks, I'm curious.. do you have any problems with vision? Sensitivity to strong light or sunlight? Have silly sun grins whenever it's sunny outside?
Click to expand...

Yeah. :)

My vision is fine... healthy-wise. I wear a pair of eyeglasses, but it can change shade once I'm outside which is a big help.

Sensitivity to light? That depends. I get the silly sun grins sometimes. :-P
 
me_punctured said:
I'm very sensitive to bright sunlight. And light in general too. I can't fall asleep if I can see the light peeking through a closed door, even with my eyes shut. I can't fall asleep if there's a night light in the room.

My eyes are naturally bright blue.
Click to expand...

Very interesting! I'm the same way in regards bedtime- window has to be sealed off and the door closed, my clock is tucked inside the nightstand. Total darkness required.. Wasn't expecting that answer.. wow.

I'm also very sensitive to bright light anywhere. Outside in sunny days, my eyes are practically sealed shut with a big dumbass grin.. sigh.
 
Banjo said:
Yeah. :)

My vision is fine... healthy-wise. I wear a pair of eyeglasses, but it can change shade once I'm outside which is a big help.

Sensitivity to light? That depends. I get the silly sun grins sometimes. :-P
Click to expand...

Thanks! My vision is okay, starting to need glasses if I'm reading for long periods of time or for small print though. I've heard of those glasses, so cool.. what are they called? I probably should get them too.

Your sun grin bud.
 
cathartes said:
Hi Banjo & other Waardenburg folks, I'm curious.. do you have any problems with vision? Sensitivity to strong light or sunlight? Have silly sun grins whenever it's sunny outside?
Click to expand...

I know someone with Waardenburg who does not see well out of her blue eye (she has 1 blue and 1 brown eye). She is hearing though, but she is the sister of my deaf ex-girlfriend.
 
cathartes said:
Lucia, if you're before 30 years of age.. it could be, maybe not. Premature graying is one characterstic of Waardenburg's. But it's a common & widespread trait so it isn't an effective indicator if it appears to be the sole symptom.

White spots ARE a good indicator of Waardenburg's though. The white spots can be anywhere on the body.. the forehead spot just happens to be a common & most visible location. Besides you don't usually see other parts of other people's bodies anyways.. ;)

Even so.. the white spot could be due to other things such as vitiligo or piebaldism.. those don't have anything to do with deafness. (yes I know piebald is used to describe the Waardenburg white spots/forelock but it is also the name of independent genes that cause white spotting on people but doesn't cause deafness)

It helps to look at the family tree, if there are direct blood relatives with either one or more of those: premature graying, deafness, white spots, different colored eyes(heterochromia iridum). If those are present in other relatives then it becomes more likely- especially if any relatives have heterochromia.. that's often considered a very strong sign of Waardenburg's.


I have Waardenburg's Type II- deaf, different colored eyes, premature graying. Wasn't born with any white spots but post puberty acquired what looks like a small white forelock with a streak going off to one side. My beard & moustache would be 99% white already if I let it grow out even though I'm only 37 now.
Click to expand...

I'm sorry, I guess I should of clarified what I meant of white spots...I meant white spots of hair not skin. I don't exactly call them white locks of hair because they're not thick chunks of hair like I have seen in several Waardenburg people. Just quite a few strands (maybe 20 or so) of white hair in one very small area. Another reason I called them white spots was because when I was 20 years old, I decided to shave my hair very short, and there the "spot" was...it looked like a spot rather than a lock because my hair was very short.
 
LuciaDisturbed said:
I'm sorry, I guess I should of clarified what I meant of white spots...I meant white spots of hair not skin. I don't exactly call them white locks of hair because they're not thick chunks of hair like I have seen in several Waardenburg people. Just quite a few strands (maybe 20 or so) of white hair in one very small area. Another reason I called them white spots was because when I was 20 years old, I decided to shave my hair very short, and there the "spot" was...it looked like a spot rather than a lock because my hair was very short.
Click to expand...

Seems like you're saying it's a well defined patch of white hair? If so, a spot is a spot, irregardless of size & location(it really can be anywhere on the body- on the torso or lower arms is not uncommon). "Genuine" spots can be any size from tiny ticks to large ones measured in inches. The large chunks of white hair just happened to be "larger spots" and white forelocks merely are largish spots located on the forelock. (there is an explanation as to why the forehead/forelock seems to be a trademark location though).

What it could be in your case is still an unknown as you weren't born deaf.. if there are other direct relatives with any of the trademarks, it increases the likelihood the spot could be related to Waardenburg's. Doesn't totally prove it though, unless genetic testing was done.. or if you have children with someone who doesn't have history of Waardenburg's & any of your children exhibit white spots, heterochromia and/or deafness.
 
wellll... i am Waardenburg's Syndrome... i have navy blue eyes ( no black middle and it special navy blue middle) and have lot white hair front... i have born with skins (everyone thought it was burn but nope, it natural born that way..)
 
I have a friend who has got the waardenburg's syndrome and she is Deaf as well too plus her young brother has got too. She is 22yrs old, has got white spot hair and she hated it and she kept dying every 1month to cover it up because she feels shame but for me I do think she is very lucky cos she doesn't need to go do her hairdressing to do her hair cos it stands her out very well. Some of us in New Zealand girls had to go to the hairdressing wanting to get the highlight hair and some maybe blench hair but not all of it. Also my friend, she is about 35yrs old, she has the same ones other friend 22yrs old, she was proud to have her waardenburg's syndrome white spot hair in her front head and it looks real suitable on her well.
 
One of my students has it. He has the most beautiful blue eyes I have ever seen! yes, he has that white spot but not a big deal. :)

One staff at my work is black and has WS with blue eyes. He is soooo hot! LOL!
 
shel90 said:
One of my students has it. He has the most beautiful blue eyes I have ever seen! yes, he has that white spot but not a big deal. :)

One staff at my work is black and has WS with blue eyes. He is soooo hot! LOL!
Click to expand...

LOL! It has been said Waardenburg's is one of the few 'syndromes' that can make a person more attractive.

Wish I could meet you guys with Waardenburg's.. I've met another person with different colored eyes only once & that was too long ago. It's just not fair to get reactions and comments on my eyes and *I* don't get to comment on anybody else?! LOL!

BTW one of the funniest reactions to my eyes was when I went out to lunch at Burger King with a friend and his friend(met him for the first time) and when I went to get a coke refill, his friend whispered very seriously to him "Does cathartes know one of his contacts fell out...?" :giggle:
 
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