I Have Erythropoietic Protoporphyria

A Erythropoietic Protoporphyria anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Erythropoietic Protoporphyria. You're not alone. 19 People

    Erythropoietic Protoporphyria

    Well to get started, iv been looking for somwhere to share my story for a while i never thought i would find a place. I first found out i had EPP when i was about 7 or 8 years old i geuss you can say i was lucky in that way, well i'v been very lucky with my EPP. My mom said the...
    littlebee95 littlebee95
    16-17, F
    1 Response Dec 13, 2011


    I was diagnosed with EPP about 2 yrs ago. I am 28. I've been in and out of hospitals and doctors since I was a kid and no one could tell me what was wrong. Finally, I got a doctor that helped. Recently, my wife and I have been talking about moving to Australia because that's...
    R1C0 R1C0
    1 Response Sep 25, 2011

    Ever Since I Was 2-3 Yrs Old

    Hi my name is Joe and I have as long as I can remember having  this disease and I have tried everything and have recently found the name to this as my sister started having this when she was 21 and now I am going to do everything i can to help myself take care of it better.
    jsekief jsekief
    Jul 19, 2009

    Think I Have Erythropoietic Protoporphyria

    I haven't been able to get an official diagnosis yet, but I believe that EPP is the cause of my sun sensitivity. My symptoms are intense pain for the first day or two after sun exposure with a delayed swelling that leaves my skin red as the swelling goes down by the third or...
    caraccio3 caraccio3
    2 Responses Jun 11, 2011

    I to Have Erythropoietic Protoporphyria

    Hi my name is Edward Smith i live in Australia,married with three kids. I was born with Epp,my mum didn't know what i had until i was 14.I would like to find and chat with other people within Australia or the world.Who also have Epp you can find me also on...
    vampire1 vampire1
    41-45, M
    2 Responses Sep 29, 2009

    Erythropoietic Protoporphyria

    I got it too, had it since I was 5yrsold. No one believed me either. Why is it that people think EPP=hypochondriac?? Right now I'm looking to invest in some decent protective clothing, but I have no idea what type to buy. SPF rated clothing doesn't really mean anything because it...
    cloudydaysrock cloudydaysrock
    31-35, M
    1 Response Mar 20, 2013

    I Have Erythropoietic Protoporphyria

    Hi My name is Kim I was diagnosed at 4 years old. I am now 34. I have manged EPP well for many years so much so my husband of 7 years has never seen the symptoms until this summer when I have been admitted to hospital with a particularly nasty flare up and I am currently...
    KimMcGowan KimMcGowan
    1 Response Aug 14, 2012

    I Have Just Been Diagnosed With Epp

    I Have Erythropoietic Protoporphyria Hi My name is Victoria and I am 25 years old. After 25 years of trying to get someone to listen that I had a problem someone actually did! Doctors and my family used to think I was making it up right up until I was 16 and ended up in...
    daisymayharrold daisymayharrold
    22-25, F
    7 Responses May 31, 2009

    I Have Erythropoietic Protoporphyria

    I live in North Carolina and travel extensively on the road. I was diagnosed as a small child-- my brother and I both got EPP bad as infants. My parents loved the sun, so we were always hauled to the beach. I love the water-- I am on vacation now-- but have to limit the amount...
    LaraRo LaraRo
    36-40, F
    Jun 13, 2012
More Stories