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Go Back   Vascular Birthmarks Foundation Forum > Individuals Living with Birthmarks > Living with a birthmark - my story

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  #21  
Old 11-12-2004, 12:57 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re:Growing up with a PWS

Hi Kathryn,

I just wanted to let you know if you need any info about PWS to put into your thesis let me know.
I know what you have gone thru and what will go thru.
Even though I am only 22, but I know what it is like to have surgery after surgery with little results. After 14 years of laser treatment, not even 1/4 of my birthmark has been removed. Hopefully Dr. Waner will be able to change that in Jan or Feb.

Talk to you later.

Hank
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  #22  
Old 12-08-2004, 12:00 AM
thedebstr
 
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Default Re: Growing up with a PWS

I am 47 years old and have a PWS that covers the lower half of my face, the entire neck and ends in a triangle on my chest. My 19 y/o son saw Dr. Waner on the discovery channel last night and that prompted me to start surfing this subject again. I am amazed at the support, resources and information now available on this subject. As a child my parents search for solutions that unfortunately included Uranium T2 treatments that now leave me a candidate for thyroid cancer; though that possibility has yet to materialize. I've worn covermark, coverblend and dermablend since I was 14; I hate the masky look but hate the attention from strangers more. I'm anxious to try a couple of the suggestions posted here since as I am aging those thick creams result in less and less appealing results. I stopped wearing the makeup for about a year when I was 27, until I realized my son would bear the brunt of that decision. I do believe it has molded me into the strong woman that I am, but I am tired of the time, expense and mess of the makeup. I've found over the years that going out of my way to be friendly and engaging people that stare in conversation (even just hello, or how are you?) allows them to realize that I am a normal person or reasonable intelligence who just looks different than normal - and that perhaps they ARE being rude. I am a college grad and a department manager for a manufacturing outfit; so it is not impossible to find success, perhaps a little harder that without it but certainly not impossible. The biggest stumbling block I think sometimes is us; PWS or not, if you are not comfortable with youself, no one else is going to be either. I've been looking for Dr. Waner's contact information. . .thought I found him in Little Rock, but it appears he may have moved to NY? If anyone knows for sure, I'd appreciate the info.
Debbie
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  #23  
Old 12-08-2004, 01:44 AM
hankbartenbach hankbartenbach is offline
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Location: Nebraska
Posts: 538
Default Re: Growing up with a PWS

Hi Debbie,

Welcome to to foundation. Yes Dr. Waner has moved to NY. I will email you the information you want.

Hank

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  #24  
Old 12-08-2004, 03:22 AM
Jin9084
 
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Default Re: Growing up with a PWS

Hi Debbie. Welcome. I wanted to give you another resource. www.birthmarks.com It is made up of adults with PWS and parents with children of PWS. My son has PWS and SWS. He is 3. I have found a lot of helpful information on that site. Once again glad that you found us.
Jinny
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  #25  
Old 12-14-2004, 01:51 AM
lbro
 
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Default Re: Growing up with a PWS

Hi, Melissa,

I am a 35-year-old woman who grew up with PWS. I have seven birthmarks on the right side of my face.

I recall feeling a lot like you do at 14. I learned to apply my makeup well, and I've always been almost cocky I'm so confident. I've also had 54 laser treatments with Dr. Luckasen in Omaha, NE over the past 14 years. But having a PWS is no easy road, especially for a young woman.

You might want to read Joie Davidow's tips on makeup at birthmarks.com. Or, if you want me to explain how I do mine, I will be happy to share. I use a combination of Max Factor Panstick with a wet sponge for foundation, Physician's Formula green cover stick to alleviate the red of the PWs, Estee Lauder Double Wear Concealer, and Cover Girl Pressed Powder to cover it all up. Sounds like a lot of makeup, but it's really not too bad-- and my option is pretty cheap compared to other combos.

If you are interested, write back and I will go into some detail about the makeup. I'll be happy to attach some photos, too. And you are more than welcome to ask me any questions you'd like about my own experiences with PWS or laser treatments.

Lyn
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  #26  
Old 01-09-2005, 01:57 PM
nimmie
 
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Default Re: Growing up with a PWS

hiya all.

i'm a 28 year old girl (do they call 28 year old females girls???) living in Singapore and it was great finding a support site where people actually understand me and know what i've gone through!

Growing up with the stain on my face and legs had made me....wellll...i wouldnt say better person, but perhaps more tolerant and understanding towards people.I know most of the people here will or have used makeup to cover them birthmarks -- I have thought of that too, but decided it was too much of a hassle to do that for the rest of my life. So i went through school getting called redface, lobster etc...well of cos they hurt but these names slide off after some time. At work of course i get discriminated somehow cos i'm not as pretty as others and in a job like mine (i'm a Personal Assistant), looks DO get you somewhere. In life I've never been the one who turned heads for the correct reason, who don't get men attracted to me by the dozens.

but hey, you know what? i know that whatever achivements i get at work is purely by merit and not because i'm a pretty accessory. and men HAVE loved me for what i am, what i look like. And i like to think of the birthmarks as a blessing in disguise, because i know the men who love me, love me for ME!
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  #27  
Old 01-09-2005, 08:49 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Growing up with a PWS

You go Nimmie,

You stick to that job, and you will only see good things in your future.
From what I have heard you say so far on this site, your PWS has made you a better person. Tolerants comes with that as well. Parents, family, and friends might share your feelings with all the pointing, staring, laughing, and the name calling. But they just do not understand what it is like to live with it on a day by day basis. Some people use makeup to hide their PWS, but that is just covering up the problem. I admite I have cosmitic makeup that I can were if I want, but I hardly every use it, unless I am going to be around allot of people I do not know. That might sound weird coming from a guy, but think about it all male actors were makeup what is the differents.

Anyways I am proud of you for standing up for yourself, and if you want to go somewhere and do better things as a Personal Assistant, all you have to to is set your goal and do hold back because Nimmie is coming thru. LOL

Have a great day,

Hank
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  #28  
Old 04-16-2005, 07:58 PM
LoupGarou
 
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Default Re: Growing up with a PWS

Hi, everyone

I'm a 21 year old girl from Norway (please excuse my lousy english). I have PWS on almost the entire right side of my body, including the face.

I grew up in a loving and caring environment, and I had a great childhood, with a lot of friends. My parents were worried that I would be teased when I started going to school, so they always told me that it was important to be polite and kind, but also that I had to stand up for myself, and not tolerate teasing. I learned to read early, and my vocabulary greatly exceeded that of the other children of my age (I got to read books for adults too), so I promise you, the children that tried to tease me were those that ended up crying.. And I always got away with it, being "the poor little girl with the birthmark" *evillaughter*

I made many friends at school. Puberty came, and of course, that was a horrible time. But; and this is important to remember, it is for everyone! Noone gets through puberty without a scar or two.. Looking back, I now see that I had no reason to be that uncertain and unhappy.. I used to cry because I had no boyfriend. I thought that I was ugly and didn't dare to do something about it. After growing up, some of my friends from that time have told me that they were in love with me, but didn't dare to tell me because I was such an "Ice queen".. It wasn't my PWS that kept the boys away, it was my uncertainty, and thus my coldness..

I left home when I was 16, to go to highschool. It was difficult to make new friends, so I decided to develop the interests I already had. I started to work for an organization (operation dayswork), and got involved in youth politics. Suddenly, I found myself standing in front of 400 people, talking about international issues, without any makeup on (easier to get attention that way )

I have to admit, though, that I wear makeup on my face in public. Why not? People that don't have PWSs wear it too. I live in a big city now, and I really do not have the time to answer all the questions from curious people. I feel more comfortable in public with my makeup on, but then again, so do all the other girls that I know.

Now, I study biology at the university. I live with my boyfriend. When we started to date, I was, of course, very nervous. The puberty issues were still there. But he said that he was so fascinated by my strong personality that he wouldn't let me go.* And I am grateful for that now, we have a great relationship. He loves me for who I am, and gets angry when I wear foundation when we're at home, he wants to see the real me.

Oops, I have written too much already. I just hope that my story can cheer other young girls up. One must not indulge in that "I have a birthmark, poor me" thing. Everyone has an issue, something that they don't like about themselves or their lives, or that other people don't like about them. A lost leg is a pretty big issue, so is a molester uncle. A PWS is not! Do not define your personality from that birthmark of yours, define it from what interests you, what makes you happy and what makes you feel like a complete, strong person! Write down a list of the things that you think are "you". It can be interests, food you like, music you like, favourite writers, words you just think sound beautiful, words that give you a warm feeling. Take a look at that list now and then, find out which things you want to learn more about or do more of, and do them! This is especially important if you start to feel depressed. Your PWS is not what makes you different, your personality is. Indulge in your personality, develop it, let it shine through. Live life to the fullest, what else is there to do?
Wow, that rhymed, a clear sign that I have to stop writing now
I wish you all good luck

Hugs, LoupGarou
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  #29  
Old 04-17-2005, 12:14 AM
nickbar nickbar is offline
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Default Re: Growing up with a PWS

THANK YOU for sharing your story!!!

CORINNE
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  #30  
Old 04-17-2005, 03:28 PM
eprmo eprmo is offline
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Default Re: Growing up with a PWS

what wonderful, heart felt story,,I admire you,,and belive you have a very solid head on your shoulders.

My daughter who is 15 seems to feel JUST LIKE YOU!!!

Elissa
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