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!