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

    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

    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 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

    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
    18-21, F
    1 Response Dec 13, 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

    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 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

    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

    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
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