What is acute intermittent porphyria?

Acute intermittent porphyria is a rare genetic disorder that primarily affects the nervous system. It is characterized by intermittent acute episodes of abdominal, mental and neurological symptoms that appear quickly and usually last a short time.

How do members experience acute intermittent porphyria?

Top 5 symptoms reported by people with acute intermittent porphyria*

*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.

Top treatments taken by people for acute intermittent porphyria*

Who has acute intermittent porphyria on PatientsLikeMe?

Age

Age Proportion # of patients
<20 0
20s 2
30s 7
40s 15
50s 17
60s 21
70+ 10

Distribution of sex

Sex

Sex Proportion # of patients
Male 10
Female 64

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What is acute intermittent porphyria?

Acute intermittent porphyria is a rare genetic disorder that primarily affects the nervous system. It is characterized by intermittent acute episodes of abdominal, mental and neurological symptoms that appear quickly and usually last a short time.



Common symptoms reported by people with acute intermittent porphyria

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.
Last updated:



Treatments taken by people for acute intermittent porphyria

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

Got a question about living with acute intermittent porphyria? Members in the forum might have the answers.


Compare treatments taken by people with acute intermittent porphyria

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

Got a question about living with acute intermittent porphyria? Members in the forum might have the answers.



Who has acute intermittent porphyria on PatientsLikeMe?

  • 0 new patients joined this month
  • 55 say acute intermittent porphyria is their primary condition

Age
Age Proportion # of patients
<20 0
20s 2
30s 7
40s 15
50s 17
60s 21
70+ 10
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 17
20-29 years 7
30-39 years 4
40-49 years 1
50-59 years 2
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 10
Female 64

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 32
Not Diagnosed 4

These charts show data from acute intermittent porphyria patients who have completed their condition history
Last updated: