How old were you when you were diagnosed?
I was seven years old.
Do you remember your first flare/reaction?
What did it feel like to you?
My hands just hurt so bad. I felt like someone was holding them down on a burner.
What things help you feel better? (cool water, ice, shade, bath, clothes)
I make icepacks and sit in front of a fan. Usually a cool dark room for the entire day or two.
How long does it take before you start to feel better?
About a whole day sometimes 2.
What kind of clothing/trends do you wear when you go outside or in bad lighting?
My brother and I love to be outside- Hunting & fishing. We just have come to the realization that we have to be completely covered up from head to toe. We don’t mess with sunscreen anymore.
What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
I love to play Baseball, but it was hard to stay covered. So now I mainly hunt & fish. We fish & hunt during the day.
What ways are you able to adapt to do certain activities outside?
Covering up completely!
What fun things are you able to do inside your home while the sun is out?
A lot of times, I watch fishing videos on YouTube.
What has been the best vacation ever?
I love going to Red River, New Mexico. We go every year & also the lake for 5 days.
Have you met any other kids with EPP before?
Yes, my Brother.
Do you go to School/Homeschool?
Do you have to go by car, bus or walk?
What things do you have to do to protect your skin (In school) or (taking the car or bus)
Sometimes, I have to put Vaseline on my hands, but nearly as often as my brother.
Is it hard for you to tell your friends, teachers or family what EPP is?
No, my friends and teachers know and they are very supportive.
What do you tell them?
Basically~ I’m allergic to the SUN!
What things do you do if you feel sad or left out?
Since my brother has it to, we either talk to each other. If we do get left out- We just go fishing together.
What do you want to be/do when you grow up?
I either want to be a Texas-Ranger (law enforcement) or a professional fisherman. Id get a job a Cabela’s or Bass Pro Shop!
What advice can you share to help other kids that have EPP?
DON’T LET EPP WIN!
Parents- How do your children deal with their EPP? (flare/pain)
The boys usually go make their own ice-packs. They have gotten better at covering up-Protection from the SUN. Definitely would be a life changer! My kids have always wanted to go to the beach for vacation, but we are afraid to invest money into it.
Thank you, Caul for taking the time and sharing your story. We know we don’t want to get a ticket from you anytime soon!