We often get asked "what is PHACE and what does it stand for?"
I bet you've been asked this and it can be difficult to explain. Please feel free to share this newsletter so people around you, family, friends, and even physicians, have a better idea of what PHACE Syndrome encompasses.
PHACE Syndrome is the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes, skin and/or arteries.
Our logo was specifically designed so that each of the letters, PHACE, reflects the associated birth defect:
Posterior fossa abnormalities and other structural brain abnormalities.
Hemangioma(s) that are typically large and located on the skin of the head and neck area.
Arterial anomalies of the head (brain) and neck. These can be arteries that are too narrow (stenotic) or dilated (aneurysmal) or the lack of normal blood vessels in the head and neck.
Cardiac defects, with the most common being coarctation (narrowing) or the aorta or other aortic abnormities.
Eye anomalies not caused by the growth of the hemangioma such as problems with the optic nerve.
Would you help us raise awareness about PHACE Syndrome?