Erythropoietic Protoporphyria (EPP)
Audrey Shering: I had been searching for an answer to what I have all my life, feeling lost and completely alone in my journey. I have had incredible pain from the sun since early childhood. I knew I had to avoid the sun at all times, otherwise I would suffer for days at a time.
This is my story: I was born to a Mentally Retarded Paranoid Schizophrenic single woman (her actual diagnoses) anyway, I remember the first time I felt the pain from the sun, I was 4, my cousins, friends, & I were outside sitting on a sheet eating hot dogs when I just couldn't stand the burning any longer on my hands, I remember wrapping my hands in the sheet to try to stop the burning, of course it didn't help, I went crying into the house to tell my mother, I didn't have to go back outside with the other kids, but no one knew what was going on or what to do, I seemed to know cold water would ease the pain, temporarily.
I was taken away from my mother after horrific abuse and put in foster care@ the age of 6, temporary, going back and forth from foster care to home, until I was 9 years old when I finally became a ward of the state) the first set of foster parents I had, I lived with I was 6 temporarily, of and on until I was 9. lived there full time until I was 13, they were horribly abusive, (back then who listened to kids about abuse?) they lived on a working farm, and that's just what I did, worked all day long, in the sun, it was awful, I would try to stay covered as best as I could, but always had such painful reactions to the sun, I would cry & beg to be put in the shade or go to the house, of course "it's all in your head, there is nothing wrong with you" was the response I usually got. This gave them another reason for a beating, I would cry (being just a little child) constantly, especially at night because they wouldn't let me out of bed to get cold compresses or anything to ease the pain, so needless to say because I was crying, I was keeping them awake, therefore I would get beat with the flashlight they used to light the way to my room. I would find anything cool to place my hands on, bed rails, walls, trying to reach for the air blowing in the room, anything. I learned how to muffle my crying over the years, (to this day, I am afraid of being sick or in pain because I worry I might bother someone, so I just deal with it until I can't deal any longer.) The whole time I lived there, not once did they take to me the drs, dentist or anywhere for that matter other than school, for their fear is they would be found out. I even got a beating because the school called to tell them I probably need glasses!
They didn't even tell my social worker, of my physical status, ever, & when I told my social worker what was going on, she/he wouldn't believe me because after all this family was upstanding, a bank president, look at the beautiful home, blah, blah, blah. Finally after the final beating, running away for the 3rd time and new social worker, I was taken from the home, and they were shut down. My new home was fine, they opened a whole new world for me, I did things kids/teenagers do, even went to summer camp, only to have to be picked up the next day because of my burning hands & face, went to Myrtle Beach, was out only 45 minutes, had to stay in the rest of the trip, except in the evenings, when I got home, I was hospitalized for 3 days because of the reaction, I could go on and on with different events I missed, it was so difficult.
All these years, doctor after doctor, ER trips, talking to other people, researching the internet, I finally found out about EPP almost 5 years ago. I never heard of anyone else who had the same symptoms as I, NEVER. And believe me, I asked everyone I could if they heard of anyone with burning hands, feet and face. I found it (while being housebound due to a reaction), by looking up Sun Allergies, only one site mentioned EPP, as I read the symptoms, I cried, with tears streaming down my face, pacing throughout my house, I kept saying “this is me”. (It was as if I was living a scene out of a movie) I'm in tears even as I write this, it's not that I have EPP, it's that I am not alone, & other people know & understand what I had lived for 45 years,(at that time). Tears of relief, I am not crazy! This isn't in my head, I didn't deserve to be beat for this! I have a friend who is a dermatologist, I called his office, told him about what I found on the internet & got right in, I had the blood work, urine test, & stool test, the urine & blood came back normal. He told me I didn't have porphyria.
I left the office telling myself this is an unacceptable answer, I know I have EPP, I KNOW I DO, I don't care what those test results showed. A couple days later, my doctor called me to tell me at the time of my doctor visit my test results hadn't come back yet, he was in a panic, because I in fact do have Porphyria. My test results showed a positive diagnosis for EPP. After doing research on my own, I found the America Porphyria Foundation located in Texas, I spoke to the Executive Director, Desiree Lyon Howe, who gave me the instructions how to be tested specifically for EPP. I was tested, and it was confirmed by the Mayo Clinic that I do have EPP. Knowing I have EPP doesn't change my lifestyle, I am still going to bike, backpack, mountain bike, hike, and camp and do the things I have always done, (always protecting myself) it just feels so good to know. All my life people tell me I am a very strong person. When others look at my life, aside from EPP, I guess my life has been one challenge after another, I have lived through unspeakable things, and lived in 10 foster homes, and endured so much as an adult, but I have a faith that is unstoppable. It's what we do with the Mountains we face, are we going to go around them, never dealing with the issues at hand? Or do we blast right through? I have chosen to climb each mountain with strength and courage that I have been created with. The Lord has made me very strong, sometimes bullheaded. At times I bet He shakes His head at me, so then I just tell Him, "YOU made me this way!" Yes, I am strong, only because weakness is not an option, I will not be defeated. I believe I have a purpose to help others with EPP!