My name is Katie Fabian and I have EPP.
I was diagnosed very very young, after my mom discovered some behavior when I was exposed to the sun.
I have had my share of ups and downs growing up. I have missed so many pool parties because they would be during the day. I had to cover up from head to toe when I played soccer and softball, and occasionally I would get a taste of the sun, making me very sick.
During gym classes in school, I would have to cover up, and eventually I had to give up doing outdoor activities, and do physical activity articles instead, to keep my grade up.
During the summer, I would wear shorts, t shirts, just to try to be "normal", but I suffered the consequences every time. I've learned now to do all of my activities in the evenings, to prevent me from having future attacks.
When I get a reaction, I itch profusely, and my anxiety starts kicking in. My skin gets very pink, and sometimes purple, depending on the severity of the attack.
The next day, my skin gets so swollen and I just feel so lethargic and sick to my stomach.
I have many many blisters on my hands from the sun.