Vascular Birthmarks Foundation Forum - View Single Post - hemangiomas & Phaces syndrome
View Single Post
  #5  
Old 07-31-2005, 08:56 PM
Trinemor
 
Posts: n/a
Default Re: hemangiomas & Phaces syndrome

:-)

Trine from Norway responding.
I don't know much about PHACE yet, but I've been diagnosed a PHACE as an adult.
Do you know any adult PHACE's?

But, even if I don't know much science on PHACE, I sure know a lot about how to grow up and get an education, a job and how to cope having all those physical challenges all the time, and wondering if there's a stroke coming up any minute.

Still, I'm not "just PHACE". Mainly, I'm Trine, the social person who loves mountain climbing, taking care of friends, and loving my work as a psychologist for children. Deaf and hard of hearing children, since PHACE has influed my hearing and vision due to enormous hemangiomas in my face as a child.

Parents! PLEASE keep negging and don't accept "specialists", phycisians who tell you not to worry, not to have surgery!
It may cost a lot! Lack of vision, and hearing... AND, remember, we're small personalities yearning to evolve and develop as a little person. We're not just PHACE, doctors and hospitals! And remember to get some time to be on your own as parents, get enough sleep!!

Warm summer greatings from Norway!
Reply With Quote