Here is an acronym that will help you to determine if in fact this is what the child or adult has:
P = Posterior Fossa (a tumor or vascular growth located in the rear of the brain and can often be misdiagnosed as a cyst).
H = Hemangioma or other vascular birthmark present either on the outside or inside.
A = Arterial defect in the head and or neck area – a missing or problematic artery.
C = Cardiac problems – these vary from minor to severe.
E = Eye problems – these also vary from minor to severe.
The key with PHACE syndrome is to see a physician who knows how to diagnose and treat this complete syndrome.
A team must be consulted which must include a neurologist, cardiologist, opthamologist and vascular birthmark specialist and/or surgeon. There are very few cases of this syndrome accurately diagnosed in this country.
If you suspect your child has PHACE syndrome, consult with a vascular birthmark specialist in order to receive an evaluation and confirmation of the diagnosis.