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Old 01-12-2009, 09:47 AM
hughes hughes is offline
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Join Date: Jan 2009
Location: Oregon
Posts: 1
Default General malaise and questions

Hi all,

This is the first time I have ever posted in this community, and I suppose you could say I came here out of desperation. I'm a 22 year old female college student with a PWS on the right side of my face. I had about a dozen or so treatments on it from the time I was four to fourteen, and none of them did a noticeable amount of difference, if anything at all. Because of an increasingly busy school schedule and an inability to take ten days out of my schedule while waiting for my face to heal from the dark purple bruises, I stopped doing the treatments and haven't done one since. A couple of months ago, my mother and I went to the dermatologist/doctor (don't know what his exact title is) who specializes in laser treatments in my area, and he basically told us that there was no real new technology and that any treatments I did now would have the same effects, results, and bruises as they did when I was younger.

This was very disheartening. I don't think I can put into words (and in this community, probably don't need to) the vast amount of pain and insecurity that this birthmark has caused me. I truly, truly hate it. I'm incredibly jealous when I read stories of people learning to love their birthmarks because I just don't think that's something I could ever see myself doing. This thing has stolen so much joy from me that I feel like I could have had without it. It dictates an embarrassing amount of my life- whether I not I spend the night at someone's house depending on if I have my makeup with me or not; how long it takes me to get ready in the morning because I have to do my makeup for my birthmark, which washes my whole face out, so I HAVE to do eye makeup as well, when really I like the way I look with no makeup at all minus the birthmark; whether I go to the gym in fear that I will sweat off my makeup.

For some reason, in my entire twenty two years, this whole thing is hitting me very hard in the past two days. I'm realizing how incredibly unhappy this birthmark has made me. I'm wondering if anyone knows anything at all about PWS technology and if there is a way that I could SIGNIFICANTLY reduce the appearance of my birthmark. I'm talking something drastic here; I won't waste my time for anything less than something very, very noticeable. I work and am in school and just don't have time to take ten days out of my schedule for something that's going to lighten my birthmark half of a shade. I know that it takes multiple treatments which I'm fine with, but I've had multiple treatments in the past with no real success. I'm wondering if anyone has had outstanding success with any kind of laser treatment. I'm really at my wit's end here.

Thanks for listening to me and allowing me to rant. Any questions or feedback would be most welcome. Glad I found this place. Thanks again.
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Old 01-18-2009, 10:40 PM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533

Hello hughs,

My name is Hank. I am 26 years old with a facial PWS with Sturge Weber Syndrome.

I started laser treatment when I was 5 years old. I have had more treatments then I can count now. I also have had three plastic surgeries because my birthmark started to grow over my eyes and my lip started to grow outward.

I am in the same boat as you, not having time to get laser treatments with my busy schedule. Not doing so my birthmark has started growing more.

Even as a guy I have gone to the extent of wearing make up myself. But I have learned that make up will only had the true me.

I work in retail and yes I get comments everyday, I do not love my birthmark, but I was given this birthmark for a reason and so have you.

What I am saying is if you look at the big picture and try to use your birthmark for good things instead of covering it up and trying to plan your day around it, it make you more insecure. If people around you can tell that your birthmark does not bother you, then it will not bother them. Whether you think you cover it up well or not people around you can tell something is there and as a guy that would make use see that you are trying to hide something and be shallow to yourself.
People like being around others with confidence.

I told my fiancee the day I met her about my birthmark and she could tell that it does not bother me and that I am open minded about it, and she does not care. It scares her about the medical conditions that I have because of my birthmark but the PWS itself does not bother.

Everyone has flaws, in or on their bodies. Ours are just more noticeable.

As we get older hopefully technology will get better, but as of right now I can except it that I will live with my birthmark for the rest of my life. Once you can except that for yourself then you will have a happier life with your birthmark.

I hope this help.

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Old 01-27-2009, 03:37 AM
cab cab is offline
Junior Member
Join Date: Jan 2009
Posts: 4

I'm a 20 year old college student w/ a VM from my right hip to my right knee. Luckily I'm able to hide my birthmark, but it still reminds me of its presence with knee pain everyday. I understand your hatred towards your birthmark. I feel like mine puts me in such a horrible and angry mood all the time. It's hard to be happy when it's all you can think about.
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