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Smurfy 11-10-2010 09:31 AM

My life with my PWS
Born in '78 I've had a large PWS covering about half my face,neck, and upper chest. Covers the left side of my face just below the eye down across my mouth, and down to my chest, also covering my ear inside and out, and unfortantly it also covers the inside of my mouth and down the throat. I didnt have any real treatments on my pws untill i was around 15yrs old. The first was a Argon gas laser, which unfortantly did nothing but leave a large scar behind my ear where they tested it, and still to this day I can still feel it constantly. I eventualy went to the Texas Childrens Hospital in Houston Tx where my new Dermatologist Dr.Levy began to talk me into trying laser surgery again. tunable dye laser. I did so for about 2 1/2 years. Did them every 6 weeks, for the whole 2 1/2 years. It worked kind of, it would lighten the color from the dark red, to a lighter red, but by the end of the 6 weeks it was always almost back to where it was. A long time i tried to 'fix' my birthmark, I was called all kinds of names while i was growing up, my favorite being "Kool-Aid Face". My parents were there for me when i had trouble with it, but I'm an emotional person. So I've not had an easy life because of my birthmark. i dont know if anyone else with one has the same problems I do, but I dont go outside much the sun feels like a heater put directly on my face now, alot of cobbling, and blebs which more and more keep appearing, and random bleeding from the PWS, i get it alot from my jaw, ear, and mouth areas, places that move mostly. I dont know if other people have the random lessions like that or not. I dont even know if i'm writing this the right way or not. Figured i would just put how my pws is and how it effects me. Sadly it effects me greatly.

missy 11-10-2010 12:05 PM

Hi and welcome!

You should ask Dr. Nelson what you can do about the cobbles and blebs. I believe you can have those treated, so they don't keep appearing and bleeding. You can find him on


kaykay 11-12-2010 01:14 AM

wow. you just described my exact birthmark except my PWS extends to my scalp.

Yes radomn bleeding happens sometimes. i kinda dribble when i talk for a while. kinda embrassing.

If i am doing something very phyically demanding in the sun i can feel my birthmark pounding but yes the heat does affect it.

I try to take it one day at a time an not think about it too much. denial can work great sometimes LOL

Smurfy 11-12-2010 07:44 AM

Yeah day by day is all we can do. 32 years dealing with this, its been an adventure to say the least.

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