How old were you when you were diagnosed?
I was six years old.
Do you remember your first flare/reaction?
What did it feel like to you?
I don’t remember the first one, I’ve always had them. It has always felt like I was on fire from the inside.
What things help you feel better? (cool water, ice, shade, bath, clothes)
Ice & Protective clothing.
How long does it take before you start to feel better?
It takes at least one whole day
What kind of clothing/trends do you wear when you go outside or in bad lighting?
I wear Gloves, long sleeves, hat, face mask and jeans.
What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
Baseball, Basketball outside.
What ways are you able to adapt to do certain activities outside?
I just cover up.
What fun things are you able to do inside your home while the sun is out?
I love to play the Guitar.
What has been the best vacation ever?
Red River, NM.
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)
I do have to put a lot of lotion on when I get out of the shower & car.
Is it hard for you to tell your friends, teachers or family what EPP is?
What do you tell them?
I’m allergic to the SUN!
What things do you do if you feel sad or left out?
I don’t feel left out. My friends are very supportive.
What do you want to be/do when you grow up?
Bass- Professional Fisherman.
What advice can you share to help other kids that have EPP?
Don’t be AFRAID TO GO OUTSIDE! Don’t let EPP control who you are or who you want to be.
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. The NEW treatment would allow me to spend longer days in the sun. I could enter more fishing tournaments.
Thank you, Cason for taking the time and sharing your story. We can’t wait to see you on TV on the fishing Channel!