Erythropoietic protoporphyria

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What is erythropoietic protoporphyria?

Erythropoietic protoporphyria is a disorder of certain enzymes in the blood; the hemoglobin, called heme, is not made properly. There are elevated levels of protoporphyrin IX in erythrocytes (red blood cells). This can cause abdominal cramping, light sensitivity, and nervous system problems.

Common symptoms reported by people with erythropoietic protoporphyria

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 erythropoietic protoporphyria

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Got a question about living with erythropoietic protoporphyria? Members in the forum might have the answers.

Compare treatments taken by people with erythropoietic protoporphyria

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

Got a question about living with erythropoietic protoporphyria? Members in the forum might have the answers.

Who has erythropoietic protoporphyria on PatientsLikeMe?


Age
Age Proportion # of patients
<20 1
20s 0
30s 1
40s 5
50s 5
60s 0
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 4
20-29 years 0
30-39 years 2
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 1
Female 11

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6
Not Diagnosed 1

These charts show data from erythropoietic protoporphyria patients who have completed their condition history
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