Zach B. - XLP

Type of Porphyria

Erythropoietic Protoporphyria (EPP)

zach - XLP

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