Reply to Maisiesmum
Hope you don't mind my contacting you but read your message and wanted to let you know that you are not alone.
I can fully appreciate the comments you have received about sunburn etc. My son Sam is 10 and has a PWS on his left hand and arm. Often in summer we are asked whether Sam has burnt his hand - he has even had the odd child in school say they don't want to sit next to him. Children are stronger than we know and I'm sure if you give your child love, warmth and a feeling of self worth then the PWS will only be a part of them and not define them. Sam is very confident, happy and not at all embarrassed by his PWS; he says it helps him remember which one is his left hand! When asked by children, he explains what it is and that it doesn't hurt ,as most often this is what they are worried about.
Please feel free to contact me if you would like to chat more.
Good luck! Michelle.x