the roller coaster so far

Hi everybody my name is paul Im 34 and have been a member of this forum for just a few days.However in those few days Ive become more educated than in the last 25yrs.Ive got a PWS on the back of my neck spanning from the top of my right ear down to the base of my neck.Right up until I was about 13yrs old all people(mainly children in my school) did was ask quite innocentley ask what the funny mark was on the back of my neck.Now as far as I can remember that didnt really bother me and I didnt feel any different to any other child.Im afraid as soon as I became a teenager things changed.I was taunted everyday.I was being asked if someone had spilt ribena or vimto down the back of my neck you know the sort of thing.I struggled through school trying my best to ignore the taunts and the getting on with my life which I did fairly successfuly.Once I had left school I got myself an apprenticeship in the local shipbuilding firm as a sheet metal worker.Anyway I thought all my being taunted days were over I was going to work with mature people that saw things differentley.How wrong I was.BLOTCH was what I was called.It didnt matter where I was in or out of work a quiet or busy place BLOTCH is how I was addressed.This place employed thousands of people and people who didnt even know me laughed as I was mocked.It seemed that I was the butt of all their practical jokes aswell peoeple drawing pictures of my neck on welding screens etc.These antics ruined my life and scarred me heavily.I left that job 9yrs ago now and have had 2 jobs since and not one word has EVER been mentioned about my neck.Although this was a massive step I was still very sensitive about it and at every oppotunity I will cover my neck.On a positive note Ive been married for 10yrs now and I have a 9yr old daughter who are both very supportive and I can honestly say there have been times where I just couldnt cope without them.Even now I get upset if I catch people staring or if I hear a child ask their parents whats that thing on that mans neck?Obviously I have got issues so Ive been to a therapist regarding the above but to be honest I dont feel much different.Thats what I love about this site Im in contact with real people who have gone through similar experiences.Anyway as Ive mentioned on my post Ive got an appointment on the 9th Jan to see about make up lets hope I can put a stop to this roller coaster.Thankyou Paul

Hello Paul, I am new to this site too, Hello there!!

I am 36 and mummy to Maisie aged 8 months old. She was born with extensive pws on her right arm, hand, chest and back, they also beleive but are not sure whether or not she has Klippel Treanaury Syndromme, which means her arm may or may not grow longer.

Oh Paul, where to start??? The comments, the stares, I hate it so so much, in fact so much so I have just had a breakdown because Im so fretful about my prescious girls future, in terms of people making fun of her.

Paul as a man living with PWS, how can I help Maisie, do we talk aout it, ignore it, Im so mixed up with it all???

Would love to hear from you

take care, Tracy. PS, PLEASE REMEMBER YOU HAVE BEEN SPRINKLED WITH FAIRY DUST!!!!!! - that is what i am going to tell Maisie!!!!

Hi tracy its me Paul thanks for reading my post.Now regarding concerns for Maisie.As a parent it must be very hard and I suppose you must feel a certain degree of helplesness.This feeling is justified because once Maisie is old enough to realize she has pws she will learn to deal with it her own way.My advice is to gather as much information as you can on the subject.Then when Maisie starts to ask questions or indeed anyone else they can be educated by yourself.I believe this will play a vital role in helping both yourself and Maisie deal with the pws.Another thing to do is have a good nosy round this site I myself have and found some very interesting views,advice and ideas.Like I have stated in my post Ive learned more about my pws in the last few days than in the last 25yrs.I hope this helps tracy and hope to hear from you soon PAUL