PHACE syndrome

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What is PHACE syndrome?

PHACE syndrome is a grouping of medical conditions, the acronym stands for: Posterior fossa, hemangioma, arterial lesions, cardiac abnormalities/aortic coarctation, eye abnormalities. Sometimes an S is added making it PHACES syndrome, the S stands for Sternal defects and/or Supraumbilical raphe.

Common symptoms reported by people with PHACE syndrome

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with PHACE syndrome

Let’s build this page together! When you share what it’s like to have PHACE syndrome through your profile, those stories and data appear here too.

Got a question about living with PHACE syndrome? Members in the forum might have the answers.

Compare treatments taken by people with PHACE syndrome

Let’s build this page together! When you share what it’s like to have PHACE syndrome through your profile, those stories and data appear here too.

Got a question about living with PHACE syndrome? Members in the forum might have the answers.

Who has PHACE syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 1
20s 0
30s 1
40s 1
50s 1
60s 0
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 2
20-29 years 1
30-39 years 0
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 2
Female 2

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 3
Not Diagnosed 0

These charts show data from PHACE syndrome patients who have completed their condition history
Last updated:

Let’s build this page together! When you share what it’s like to have PHACE syndrome through your profile, those stories and data appear here too.

Got a question about living with PHACE syndrome? Members in the forum might have the answers.