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Old 05-12-2004, 02:51 PM
hannah s
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Default couple of questions on pws

hi, i'm hannah and in 22 years old. i'm really glad i found this page, its nice to hear all your stories. i have a pws on the right side of my face. i started laser treatment when i was 10 and continued it for 4 years. it did fade my bm but not by very much. i was never that bothered by it when i was at school because i had known most people there for years, however when i went to university it did start to bother me. now i'm getting worried it will get darker with time. does it always get darker with age? will the skin thicken? i was quite young when i went for the laser treatment and i never thought to ask. also it is near my eye, does this mean i might get glaucoma?
thanks for listening to me
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Old 05-12-2004, 07:45 PM
eprmo eprmo is offline
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Join Date: Dec 2003
Posts: 133
Default Re:couple of questions on pws

glad you found this group!!! laser treatments have changed quite abit since you have treatment...,,so it's worth checking them out again..My daughter is 14,,and since she was born they have improved greatly....

also, port wine stains should be checked periodically by a doctor as well as eye, it's worth looking into again!

Elissa Rifkin
VBF Developmental Specialist
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Old 05-13-2004, 04:04 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:couple of questions on pws

Hi Hannah,

My name is Hank, I am 21 years old with PWS.
I am in the same boat as you I started laser treatment when I was five years old and did it for 14 years off and on. Still have not had the major areas removed where my hemangiomas are around and probably never will.
Laser machines have changed since I first started with laser treatment. I have used four different lasers in my time but that is a different story.

So far my PWS has not gotten any darker, but am also wondering if my marks will get darker.
I just graduated from college and I know exactly what you are talking about it seemed that it all started over again with the stares and questions.

I hope to talk to you soon and am glad you are here on this website.

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Old 05-14-2004, 10:51 PM
hannah s
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Default Re:couple of questions on pws

hey, thanks for the replies. i think i will go and see my doctor, but i know that i'm the type of person that will put it off, so i'll just wait until i get ill and then ask some questions! do you get a lot of people staring at you? i get some people that ask questions, and generally i don't mind, especially kids because they don't know, but i've also had some horrible experiences with people telling me its a sign of the devil! ???
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Old 05-15-2004, 04:53 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:couple of questions on pws


Yes, I get allot of stares and questions on a daily basis, my marks are very large and cover a very large area of my face and head. I do not mind when kids ask me because they have not learned about birthmarks in school yet. It is the adults that ask the rude questions that bother me.

Who ever is telling you about the whole sign of the devil is full of ____. That is so not true. God made that mark on you for a good reason. I personally beleave my marks have made me a better person. Sure I am not the most attractive guy in the world. But it is the person within that really matters. I just have to find someone who likes me for who I am not by my looks.

So where do you live? I live in Colorado.

If you want email me sometime, my email is in my profile.

I will talk to you soon.


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