15 years old with a PWS - Vascular Birthmarks Foundation Forum
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Old 01-28-2007, 11:36 PM
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Default 15 years old with a PWS

hello, ok first forgive me if im putting this in the wrong forum or anything im new here .
im 15 and have a very visible birthmark the left hand side of my face. it covers my eye half of my nose and all of my cheek. ive noticed a lot of parents on here wanting to know how to deal with there childs birthmark, i hope i can help by telling you my experiences.
when i was little my birthmark didnt bother me at all, it was just what i saw when i looked in the mirror, it was just a part of me. but as i became older and realised that i looked different from most people i became very self concious. I get a lot of stares in the streets, mostly off little children who dont know any better. Some people have asked me about it, while completely avoiding eye contact and staring at my cheek. it does affect me but i think now that im older i can deal with it better than when i was younger and didnt really know what to say. If someone asks me now i just say oh its just a birthmark, nothing special and leave it at that. My mam has always been very supportive, she really wanted me to use foundation when i started senior school, scared i would get bullied and stared at, which i did but i just smiled back, partly to be nice but partly cos i was scared stiff of the year 11's!
i had treatment on my birthmark since i was a baby which i was told stopped it from raising off my face. i stopped the treatment when i was 12 because it hurt a lot and i couldnt see any difference. my mam was always scared that i would be picked on and be shy, but im doing fine in school and are going off to college next year!i also have a saturday job which i have to work on a till and talk to people, which has really helped boost my confidence. i guess what im trying to put across is that yes people will probably stare and ask your child whats wrong with them, but accept your birthmark and other people will to, and who really cares if they dont? those who matter dont mind and those who mind dont matter. of course everyones different thats just my view
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Old 01-31-2007, 02:29 AM
eprmo eprmo is offline
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Join Date: Dec 2003
Posts: 133

I applaud you for your response,,I think you must be a very compassioante human being, and I hope your personal story helps other families.
Just keep feeling positive about yourself,,, because that's what everyone human needs to feel, pride in themselves !

Elissa Rifkin
VBF Developmental Specialist
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Old 01-31-2007, 02:47 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533

Hi Claire,

First of all welcome to the group.

I can not agree with you more about what you said above. I am a 24 year old with a facial birthmark. I have always turned to education for the younger children. It makes me feel fulfiilled. As far as the stares. As you have learned over the years you do get use to it and if you except your birthmark others will too. I work in sales in a retail store so I get every day.

If you would like to learn more about me you can visit my website at hankspws.com I also have been doing laser treatments for the past 19 years and also have had plastic surgeries to remove the hypertrophia (puffed areas) of my birthmark.

You have a very good head on your shoulders, Do not let anybody tell you that you can not achieve what you what because of your birthmark. If people do, prove them wrong.

Hope to talk to you soon.

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Old 01-31-2007, 05:43 PM
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thank you both so much! Congratulations on your engagement hank .
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Old 02-05-2007, 10:12 PM
djdoc djdoc is offline
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Join Date: Sep 2006
Location: Lima, Peru
Posts: 10
Wink Congrats Claire

That's what i was talking about in my first post, that's the way of facing the world, that's the attitude. When i was 15 -15 years ago- i did the same thing, i just faced that i was exactly like the others and decided to show'em all how sure i was of that.
I've changed my fears for confidence, i just decided not to be that guy, i was the guy.
Just when i finished my career i have to deal with my patients i decided to have the treatment -reason number one: money- but i'm managing that with just 3 applications each year. By the way Claire, the Vbeam does not hurt, and you won't feel as much as pain as with the sptdl -thx dcd.
Congrats again!
Dj Doc says Relaxxx
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Old 02-14-2007, 02:53 AM
paul dawes
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Hi Claire my name is Paul I myself have PWS down the back of my neck.Like yourself it didnt bother me until I was a teenager and I realized I was visualy different.I am now 34 and just discovered make up through the british red cross.Its give me my life back.Im afraid I didnt have the confidence or the fantastic attitude that the likes of yourself or hank have and believe me I have tried.People like yourself are a true role model for people such as myself who struggle with coming to terms with their PWS.
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Old 04-30-2007, 05:24 PM
JeZouMaarIrisHeten! JeZouMaarIrisHeten! is offline
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Join Date: Mar 2007
Location: The Netherlands
Posts: 19

Originally Posted by djdoc View Post
By the way Claire, the Vbeam does not hurt, and you won't feel as much as pain as with the sptdl
I disagree, the V-beam hurts a little bit (it feels like electric shokes on your skin, like pinches), if it isn't cooled you'll feel some heat.
If it is cooled, it will feel hot and cold at the same time, and then a burning feeling.
The lasered skin will swell a bit, and it feels like sunburn later the night.
If you're really going for something, you can't fail!
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Old 07-08-2008, 11:30 AM
Charlotte's Dad Charlotte's Dad is offline
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Join Date: Mar 2007
Posts: 19

Hi Claire,

Thank you for a wonderful post. Our daughter has a PWS on the left side of her face extending over part of her eye and down the side of her nose and upper lip. She is 16mths old and we are terribly worried that the wonderful little personality that we see developing will somehow be affected by how people will treat her. Reading your post is very encouraging and give us confidence that our delightful little person will grow up happy. Thank you.

Charlotte's Dad
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Old 11-06-2008, 01:43 AM
erih erih is offline
Join Date: Nov 2008
Location: Illinois
Posts: 56

Hey Claire!
Thanks for telling this story. I also have a PWS on the left side of my forehead and eyelid and have had a similar experience. No real teasing that i can remember, except in 3rd grade by a 2nd grader...
I can tell that some people are a little uncomfortable about it, but if they stick around to get to know me, they forget it's there--I'm often surprised myself when I glance in a mirror! Or when a little kid points it out.
The hope a dream and the wings to be free
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