little help....

My 21 month old son has a PWS on his body, it is mainly covered by clothing, but a section on his neck and arm are exposed to the world, so to speak.

So far we have only had one comment from a 4 year old about it, he said 'that little boy has a big bruise' but I know that when he goes to school (my son) he will get a lot more comments, good, bad or indifferent.

I would like to hear from ANYONE who suffered in school, society and in everyday life with their PWS and the comments that you got and how you coped with them.

Hi--my daughter wasn't too bothered when she was with kids she'd known forever...it got bad when we moved and new kids had questions. adolescence has been TOUGH. hers is a mild case, but to her it's awful. she has pws on her torso, so it's usually hidden, but two-peice suits are out--midriff baring tops, etc. she would do anything to get rid of this.

Hello. I've probably had more experience than anyone on this board since I'm almost 63 years old. My PWS is on my left thumb and the top of my hand and travels up my left arm, skipping a few places here and there. I have always hated having these marks, but I went ahead and lived as normally as possible, even wearing strapless evening gowns and swimsuits. People have always been kind to me. I have had comments but when I explained that the marks were birthmarks, no one said anything more about it. I was constantly the new girl in school since we moved often, but I was always accepted with no problems, even being selected to be in beauty contests. It didn't keep me from having boyfriends or husbands either! I have been truly blessed. I do prefer to hide the marks, but I don't think it's something anyone should feel they have to do.

Hello ,

If possible try to get treatment for child. I am 42 with a Port Wine stain on the right side of my face and still live with being teased and called strwberry face in second grade. My mom also tried makeup at a youg age and what a mess that was. I am still embarrased of my face and it is hard to go swimming in the summer.

So please for your child do something and save them from the heartache it causes.