Patient Comments: Porphyria - Types


What type of porphyria do you have? Please discuss your experience. Submit Your Comment

Comment from: Catwoman, 65-74 Female (Patient) Published: August 08

I have hereditary coproporphyria. My symptoms are a numb right leg, pain in arms, legs, stomach, back, allergy to sun, and paranoia with crying jags and severe depression that lasts a few hours. Twice, while drinking alcohol, before being diagnosed, I had loss of vision with mania and screaming fits. Sound terrible? It is.

Comment from: Symon, 65-74 Female (Patient) Published: July 26

I have acute intermittent porphyria (AIP). This was diagnosed at the age of 23 (47 years ago) after a series of investigations for severe abdominal and back pain. I had recently got married and had been prescribed oral contraceptives. It was finally diagnosed by a gynecologist when I had a severe reaction to the anesthetic after having a laparoscopy. I had an episode a year ago after being prescribed Oramorph. I am currently recovering from an attack which started 24 hours ago. My general physician and hospital doctors were not much help.

Comment from: Mts1960, 45-54 Female (Patient) Published: January 06

I have two of the types of porphyria, acute intermittent porphyria (AIP) and cutanea tarda.


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