All my life I have been an indoor kind of girl. I really didn't think I had much of a choice. Every time I went outside, I was in excrutiating pain. Before I was even old enough to know better, I would stay indoors.
When I was about 18 months old, my mom took me to the beach near where we lived in Florida. Within a half hour, I started screaming. Nothing could be physically seen wrong with me until the swelling started. Then I turned purple, so when the doctors saw me, they said I had been stung by a jelly fish. It seemed logical to my parents. Months later the same thing happened and the doctors said it must have been caused by decomposed jelly fish, or maybe even an allergic reaction to the sunscreen. Each time it ended the same; me swollen and purple and the doctors not knowing the cause.
As I got older, I learned to adapt by wearing certain clothing and staying out of the sun. If I was forced to go outside for some reason or another, I was very quick to spot the shaded areas so the pain could be lessened a bit. My clothing tends to look a bit extravagant, especially my Sunday dress. When I take a simple dress; add long satin gloves, big hats (always nicely decorated to match dress) and topped off with a parasol, people just think I'm an extravagant person. It's easier for me if they think that than have to explain to them that sunlight is painful.
At work my co-workers call me the "vampire" because I work in a dark corner with all my windows covered. Any time I have to walk outside, I have on a big hat and gloves. For me my biggest frustration is that I only got my diagnosis in October 2005. I am a 28 year old woman who was thought to be crazy by everyone else—even doctors—until the diagnosis. I have been told that it was only in my head and that the sun could not be hurting me until my last episode.
Last June, I was outside staying in the shade the entire time and again it was for only about 30 mintues. Even with my long sleeved shirt, my arms were stinging, my hands swelled up, my eyes swelled shut and every part of me that wasn't covered with heavy fabric turned purple. I spent a couple days crying in pain. One night during this period, I couldn't sleep so I got up and decided to watch a movie. It was about children who couldn't be exposed to sunlight. I watched the extra features and found there are a number of diseases that made sunlight painful. So I went on-line, researched them, and found the APF. They lead me to a dermatologist. I went to the only local dermatologist in my area. He then sent me to Vanderbilt because he admitted that my case was a bit out of his range.
That doctor was wonderful. She talked to me, asking questions I never thought were relevant, like what happend when my gall-bladder was removed. And after a good long while, she looked up at me said, "We'll have to do some tests to make sure, but I bet the farm it's porphyria." Then after all the blood tests came back, she knew she was right. I had EPP. If I could have hugged her through the phone, I would have. To finally have a name for what's wrong with me, know that there are others out there like me—and know that I'm not crazy—was a real relief.
Since my diagnosis, I have been involved in seminars at Vanderbilt about rare skin conditions and diseases. They also want me for the liver seminars in the future. I gladly volunteer to help spread some light on this disease that so many doctors know nothing about, so maybe someone else in the future can have a quicker recognition of their condition than what I had.