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!!!!