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  #1  
Old 12-30-2006, 02:48 AM
sarah14 sarah14 is offline
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Join Date: Jul 2006
Posts: 8
Default Living with PWS.

hi there.
i have PWS all up and down the side of my right leg. i've resorted to just wearing jeans all the time no matter what. i feel like i'm obbligated to because i know people at my high school don't want to see my birthmark and they'd probably make fun of me anyway.

so i was wondering how many of you cover up your PWS and how many of you don't. if you don't can you give me some tips on how to deal with staring,name calling, etc.? i would LOVE to wear shorts or go swimming! but i'm too self-concious about my leg.

anything help would mean alot! i'm so excited to finally see that i'm not the only one with PWS out there!!! ^.^ !

thanks!
Sarah
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  #2  
Old 12-30-2006, 10:33 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
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Hi Sarah,

First of all welcome to the group.

I am 24 years old with a facial PWS. Even being a guy I have tried cosmetic makeup at two different times in my life, but it made me look like a ghost with pale skin. So I decided not to wear it anymore. I have found out over the years that the pointing, staring, comments, laughing, and questions I have got are just people showing me how uneducated they are or how rude they can be. For children have found educating them about my birthmark and not to be affraid of people that are different is ok we are just special. For adults I have learned to let the comments role off my shoulders or go in one ear and out the other. It gets to the point where I do not even know they are looking at me becaue I do not pay attention enough. There are he few that I hear and I just make a smart ___ remark back to them that makes them look uneasy.

I have always thought that if someone can not except me because I have a birthmark then I do not need them in my life. It is negative environment and is not healthy for a person. It is just like if you ever became in a relationship with someone if you hide it from him it will just make things worse rather then telling him up front about your birthmark. If he can not except it that is his problem.

You just have to give yourself a mind set that it is not going to bother you when people look at you. People will always ask questions. Just be honest with them and turn to education. If someone is staring at you stare at them back with a glare.

Hope this helps. If you have any questions for me you can either message me back or email me directly. If you want to learn more about me and see what my birthmark looks like you can go to my website www.hankspws.com

Hope to talk to you soon.

Hank
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  #3  
Old 01-16-2007, 09:13 PM
mikeb23ft
 
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Hi Sarah. I have PWS on the left side of my face, and I made it through highschool without any problems. Dealing with staring and name-calling is easier than you might think. I've never had to deal with name calling, really, most people are just curious about what your PWS is. People may think you've been bruised or burned. Don't be afraid to explain what your birthmark is if you notice people looking at it or if you think someone is wondering about it. Once you've explained it to them, it won't be an issue anymore. Good luck!
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  #4  
Old 01-19-2007, 08:39 AM
paul dawes
 
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Hi Sarah my name is Paul Im 34 and have a PWS down the back of my neck.It has to be said that it ruined my life.Talking to Hank(2 posts up)really helped me the guy has a great attitude towards his PWS.Have you ever thought about make up. I myself have just started to use it and it is really working for me.Im dont know where you are from but over here in England the British Red Cross provide an exellent service.Dont worry Sarah you will find a way of dealing with PWS.
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  #5  
Old 02-08-2007, 09:59 PM
Jimmy2007
 
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Quote:
Originally Posted by paul dawes View Post
Hi Sarah my name is Paul Im 34 and have a PWS down the back of my neck.It has to be said that it ruined my life.Talking to Hank(2 posts up)really helped me the guy has a great attitude towards his PWS.Have you ever thought about make up. I myself have just started to use it and it is really working for me.Im dont know where you are from but over here in England the British Red Cross provide an exellent service.Dont worry Sarah you will find a way of dealing with PWS.
Hey Paul,

My name is James and my son was born with PWS in Jan of 2007. You said that BRC provides an excellent service, but I haven't found anything from them other than a little hand out in my GP... Do you have any information or websites for the North East specfically?

THx
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  #6  
Old 02-13-2007, 02:16 AM
Island Island is offline
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Join Date: Feb 2007
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Hi sarah!

I just turned 20 and have lived with a presumed pws covering my right thigh. having just graduated high school, i understand your despair. I never wore shorts that would show my birthmark. Also, mine is deep and has affected the muscle causing an obvious limp. It was really hard but I sorrounded myself with good friends who didnt care what I looked like. Its important that you have this. Feel free to message me if you ever need more help!
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  #7  
Old 03-15-2007, 11:16 PM
Aussie legs Aussie legs is offline
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Join Date: Mar 2007
Posts: 17
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Hi Sarah,
I'm 38years old and have PWS on both the back of my legs and remember what it was like as a teen, when I was young my parents never hide my marks, I done dancing, volleyball and running and wore shorts and never got any teasing but found most comments came from adults not kids. When I was 5 I got my arm stuck in the bus door and it dragged me a block before the bus driver relized I was there, I was not hurt, but the next day at school I do remember the principal of the school getting me out in front of the assembley and making me turn around and telling the kids that the marks on the back of my legs came from the bus. Some people are thick. Anyway I must admit I dont think I relized I had marks until about 14 when I started to come self consious. When I was 18 and got my first job in an office I had to wear a dress, I use to wear 3 pairs of stockings so people wouldn't ask questions but now I don't think I would do that now as I've grown up and realize that most people have something wrong with them its just that are's is a bit obvious. Even now I dont wear shorts in public but I do at home, I even made my husband put in a swimming pool for me as I didn't like taken the my kids to a public pool and been seen in bathers, I now wear the board shorts, but at home. When I started to have laser at age 27 my family asked why do you wont that done, they thought I was ok with my marks because I never complained, I just said to them do you wont them on your legs and they say no and then I say just because I never complain doesn't mean I wont them their. Since having laser I have more confidents as after 11 years of laser 1 legs is nearly gone and I'm still working on the other. I think your problably the only one that knows how you feel and what ever you do to deal with your situation is ok because we cann't change how we feel, it doesn't matter how many people or family say nobody is looking or cares, we still feel different, but I also know that my life has turn out so much better than I ever thought growing up. You will work it out, good luck!
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  #8  
Old 03-16-2007, 03:04 AM
wantego
 
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Legs thats fantastic that one leg is almost gone. Ive been working on ridding my face and forehead of a light pws.
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  #9  
Old 03-16-2007, 03:06 AM
wantego
 
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Paul I'm glad you are feeling better with it. Some might hate it on legs and some may hate it on their neck. I hated having it on my face and head. All things considered though mine is much lighter than many so I'm dealing with it.
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  #10  
Old 03-16-2007, 11:25 AM
Janny
 
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Smile

Hi
I have red birth marks on my left face. I'm 24 years old and i donnt know is it PWS or hemangloma. Mother never told me that I'm different, i'm not so care about it, but of course i hope i have not a stain on my face.

sorry if there are some expressing mistakes. Chinese is my mother language, this is my first time to post threads in English
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