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Old 04-17-2005, 10:51 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Growing up with a PWS

Hi LoupGarou,

I am 22 with PWS/SWS.

I just wanted to let you know that your story was very heart warming, and it is all true. Brought back some memories as well.

Thank you so much for sharing.

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Old 05-02-2005, 01:17 PM
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Default Re: Growing up with a PWS

I think it is fascinating how many differences there are in all of the responses here, and that seems very right to me. For those of you who dont know me, I am 46, female. I have "involuted" hemangioma scarring on the left side of my face, down my neck to my shoulder, and scar tissue on my throat area from a trach. Let me recommend Joie Davidow's book to all of you, "Marked For Life". I only read it recently, and tho it may be out of print, you can easily find it on amazon or Her experience was, of course, not my own, BUT there were things we had in common that I had never, ever seen anywhere else but in my own life. Somone here who has a daughter with H once asked what her daughter was feeling; my answer was "everything". I spent a long time trying not to feel the way I felt. Sometimes I think that I wasted too much time feeling bad when I didn't have to; when I come here, though, I can own all of my feelings. My personal motto is "Find a way or make a way", and that is how I think we all must live our lives.
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Old 08-15-2005, 11:40 PM
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Default Re: Growing up with a PWS

;D jess 18

i no what you are going throu when i was 14 i was low in confidence to but with the v beam laser my birth mark is starting to fade, and with everyone i know suporting me things are diferent, but i have it on 80% of my body and i don't cair because i am geting the cerage to ask my best friend out and i've known him my hole life and all the guys i know dont even notice my birth mark. i have had a lot of people ask me what was wrong and i tell them and they ask if its contagus and i say no. but the quties thing i have ever herd is a 3 year old sed how painted your face. i never wair make up and the one time i did people did not reconice me so do not be afrade to show your trow self no mater what anyone says ;D
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Old 12-05-2005, 05:24 PM
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Default Re: Growing up with a PWS

Originally Posted by tweety
* i have had a lot of people ask me what was wrong and i tell them and they ask if its contagus and i say no.

Sometimes I tell people that it's contageous just to see how they react *evillaughter*
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