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Carlos6362 · December 2017

Hi,

My name is Carlos and I have WS. I was born with a white patch in the front part of my head and I have hearing loss in my left ear. Feels weird because I always felt so different growing up. Wasn't really bullied, quite the contrary actually. I was envied because of the way I look. But I always wanted to be normal. And then I grew up and noticed that normal is boring lol. I have two kids. One does not have WS. And the second one does. Looks just like me and has the same hair lock as me. But he's got blue eyes. My hope is to meet or at least talk to others who have a similar story. I only met one person with WS. And that was a very interesting person. And it was in another country where we met. Seems like this condition is uncommon since there isn't a whole lot of information on it besides the obvious genetic codes. Hopefully anyone with WS doesn't feel discouraged and actually goes out and gets noticed. There really isn't a lot of us out there. So go out there and share your story!

CockneyRebel · December 2017

Hi Carlos and welcome

Thank you for joining and sharing.
I have never heard of your condition, sorry, so perhaps you could enlighten us

CR

VickiKirwin · January 2018

Hi @Carlos6362

Welcome, and yes you’re right, Waardenburgs syndrome is pretty rare. It’s thought to occur about once in every 40,000 births. But it does account for about 2 - 5 % of people who were born with a hearing loss so we do meet a few more people with WS in the Deaf community. WS features such as different colour eyes, bright blue eyes, or the white forelock in the hair are all beautiful and unique but unfortunately some people have been made to feel bad about them and disguise them, such as by dying their hair, which means they aren't as obvious in the community.

There is no support group for Waardenburg syndrome in the UK. But you could speak to Contact a Family's freephone helpline who will link you with other families if they’re aware of them https://contact.org.uk/medical-information/conditions/w/waardenburg-syndrome/

There is also an active Facebook group “Adults & Children with Waardenburg Syndrome” https://www.facebook.com/groups/362720423140/ where you could get in touch with other people who share some of your experiences.

Vicki

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