My name is Michelle MacMeeken. I have Erythropoietic Protoporphyria. I first started having symptoms of sun sensitivity when I was four years old. I grew up on a farm, so it was very difficult for me as I had a lot of outdoor chores to do.
I can remember going to the emergency room, dermatologists, etc...too many times to list. But every time, my parents were told that my blood work was normal and nothing could be found that could be causing me such pain.
My pain started on the tops of my feet and hands. The only way I can explain this pain is to imagine your skin being scrubbed off with a steel wool pad, then lighting those raw areas with fire. Nothing helped. This pain would go on for three days, longer if I had to go outside again. I would scream and cry, lick the backs of my hands to cool them off for even a few seconds. I would also keep cold, wet wash cloths on my hands and feet. But as soon as my skin warmed the cloth, I would have to turn it over. Those nights I would hardly get any sleep, even with a fan blowing on me.
I would live the next thirty eight years with this pain before being diagnosed with EPP.
I finally have a name for a disorder that not only causes physical pain, but mental and emotional pain as well. I get made fun of and stared at if I wear clothing to cover and protect my skin. I have to stay in the shade when I go out in the sun. I have trouble driving in the daytime unless it's raining or dark. I feel depressed and isolated often.
I hope for treatment that will allow for myself and others to have a more normal life.