Porphyria Community

Learn how others live with Porphyria and share your story

How to treat acute intermittent Porphyria?

by taticomary published about 1 month ago

Hi, I have had some questions for the last 48 days, since my 31-year-old daughter has a rare disease called Porphyria. Since February 18th this year, my daughter has been hospitalized for acute onset of bowel obstruction. Doctors in the emergency room treated her with rectal enemas and liquids, which cause looseness of the bowels. She was discharged after 6 days, but that night she had to ret...

Life is a struggle

by TonioGt published 9 months ago

I am an active carrier of AIP with recurrent symptoms and weekly heme infusions. I am a chemist too. I was diagnosed after almost 30 years of the first symptoms, which have evolved very slowly - fortunately - thanks to the attention that I have for my body (and from foods that refused) and education that my parents have me did achieve, as well as the survival instinct of porphyria that the carr...

Would it be Porfiria?

by maricruz_pita28 published 9 months ago

My son aged 9 years old, no one knows what he has, at last they presume something concrete: Porphyria Hi, I am from Lima, Peru, my son has complained about pain in different parts of the body since he was little, without any justification, I’ve come the emergency room countless times always for the same reason: abdominal pain without any apparent focal point, he has been interned in hospital se...

My life with Porphyria

by hansjoachimhueter published 9 months ago

I am now 43 years old and, according to my mother, I was two or three years old when I showed the first reactions against sunshine. I fought against these symptoms the entire year. I did not want to hide in the house and very often went out together with my classmates. Of course this turned out to be not so good, because the next few days I had to endure swollen hands and arms. I was lucky enou...

My life with an undiagnosed erythropoietic protoporphyria

by Flavie published 10 months ago

My EPP was diagnosed one year ago by a very experienced dermotologist. I've spent the first 24 years of my life doubting about my own pain. I have an happy life and my EPP is a very light one compared to others.

I am sensitive to sunlight, I learned to avoid sun inside the car, changing my way in the street, play with shadows and look at the sky trying to guess when the cloud is going t...

Living with Gunther Congenital Erythropoietic Porphyria

Living with Gunther Congenital Erythropoietic Porphyria

by fidemiron published about 1 year ago

Gunther disease or Congenital Erithropoietic Porphyria, is a name that though long and complicated and has taken part and takes part of my life. I was born on a cold day in January in Alicante. An excited and modest family was expecting the birth of a new member. Yes, I was about to be born. A brunette baby girl, and at simple sight, a perfect one. Nobody noticed then that something in me was ...

Summer protection

Summer protection

by mireillelarbreajouer published about 1 year ago

Aymeric was diagnosed 2 years ago.
I'm looking forward not only to find someone to talk to with this same condition and no longer feel alone and different, but also looking for advice from others who have lived the same experiences. (if one can say that). We live in the South West of France and summer is really complicated for us. We discovered the ACTINICA cream but it is not en...

American stories of living with EPP

by NBC published about 1 year ago

A very interesting watch for anyone with EPP or for anyone who supports someone with EPP… The BPA would love to be able to arrange some form of summer camp/event/holiday exchange for children with EPP – and would love to model it on the Camp Sundown provided in the US – let’s hope that this is something we can do in the not too distant future.

Hope you enjoy view...