My syndrome is rare and I am only one of two known in New Zealand, I have everything involved with this syndrome and nothing much is known about it, funnily enough it is more common then Sturge Webber Syndrome but less is reported about it. I was published in an article in the paediatrics Genetics journal or something like that.
The letter all stand for different things and the name was coined by a doctor in America,
Prosterior Fossa
Hemangioma
Arterial Venous malformations
Cardio abnormalities
Eye abnormalities
Sternal cleft (not everyone has this hence it's in a bracket)
Last November I got to go to a conference in Houston and met some really lovely people, oh I forgot, I am the only adult so far to have all of the symptoms and the only adult the parents at the conference have ever met.
Do please ask questions.
