Hello all, my friend's 16 year old son has been told he has Marphan's.
We live in Pensacola, FL and she is having trouble finding good Dr.'s
and support groups. I am going to encourage her to join in the chats
you all have......her son has had collapsed lungs, heart condition (not
sure the name of the one he has), scoliosis, hurts severly and
definetly falls into the physical description. If anyone can offer any
suggestions for her on how to handle all of this, it would be
appreciated. She is feeling very scared and very alone at this
point......and of course, some of the Dr's he sees say its not
Marfan's.....which upsets her more, but he was dianosed with it up
North.....take care.

Christy