Vascular Birthmarks Foundation Forum - View Single Post - Growing up with a PWS
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Old 05-02-2005, 02:17 PM
rand
 
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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 birthmarks.com. 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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