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.
How do members experience erythropoietic protoporphyria?
Top 5 symptoms reported by people with erythropoietic protoporphyria*
*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 erythropoietic protoporphyria*
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Who has erythropoietic protoporphyria on PatientsLikeMe?
Age
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 1 | |
| 20s | 1 | |
| 30s | 1 | |
| 40s | 5 | |
| 50s | 9 | |
| 60s | 2 | |
| 70+ | 0 |
Distribution of sex
Sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 4 | |
| Female | 14 |
Talk to people with erythropoietic protoporphyria
22
22
members say they have this condition