Zach B. - XLP

Type of Porphyria

Erythropoietic Protoporphyria (EPP)

My name is Zach. I'm 11 years old and have XLP. XLP prevents me from playing with my friends sometimes and from doing outdoor activities. I can't participate in field day at school - I get to skip that day every year. I have to wait for the sun to go down to go out on my trampoline. I wear hoodies almost every day so I have pockets and a hood to protect me from the sun. When I was at 5th grade camp (my Dad had to be a chaperone to make sure I was excused from certain activities) a staff member wanted to take a group picture. She told me to take off my sweatshirt and hood because she thought I was goofing off because it was so hot outside. I told her I couldn't and my friends stuck up for me as well. Another time I was waiting for the bus at school and we had to wait in the sun. I tried to go stand by the building in the shade and got in trouble for doing that. A really hard part of having this disease is people don't believe you when you tell them you can't be in the sun. I know there are people with much worse things than mine, but I wish it would just go away.

Zach, Age 11
Lives with XLP