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1-800-8-Marfan.
they will answer ANY questions they might have. Great organization from the little exposure I have had thus far. Request the packets of information, and they have it to a person WITHIN DAYS. They dont mess around. They have a list of their clinics, doctors, etc, and all ya gotta do is ask, and they will help.
Scott
Christy <mommysangellily@...> wrote:
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
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