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Erythropoietic Protoporphyria (EPP)
How old were you when you were diagnosed?
2 1/2
Do you remember your first flare/reaction?
Not really but my mom tells me about it
What did it feel like to you?
I’m assuming it hurt like all my other flare ups. It feels like lava on your skin.
What things help you feel better? (cool water, ice, shade, bath, clothes)
I normally take a freezing cold bath then afterwards put a cold damp washcloth on it. Sometimes I use an ice pack.
How long does it take before you start to feel better?
2 to 3 days
What kind of clothing/trends do you wear when you go outside or in bad lighting?
I wear long sleeves and pants normally from Coolibar
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 volleyball, basketball and gymnastics. Because they are indoor I’m able to do it during the day! I have loved volleyball since I was a kid, but I couldn’t do it because it was normally played at the beach where the sun was blazing hot. But when I got older thank goodness, I was able to join an indoor club.
What ways are you able to adapt to do certain activities outside?
Definitely umbrellas and good clothing. But even still, it’s not like I can run around a lacrosse field with an umbrella in my hand.
What fun things are you able to do inside your home while the sun is out?
I normally like to watch shows and movies mostly Harry Potter and Jessie. Also, I like to bake and do gymnastics in my basement (basically my play room)
What has been the best vacation ever?
100% going to Disney from the shadow jumpers. I got a VIP person and all the fast passes I could imagine! It was amazing!
Have you met any other kids with EPP before?
Yes and I’m good friends with a bunch of them! We sometimes even go to a camp together!
Do you go to School/Homeschool?
I go to school just with safety rules
Do you have to go by car, bus or walk?
I go by car because it’s the only safe way and my mom’s car windows are tinted anyway
What things do you have to do to protect your skin (In school) or (taking the car or bus)?
In school, I’m always having to wear long sleeves outside and sometimes it’s embarrassing because for fire drills I have to bring my umbrella outside.
Is it hard for you to tell your friends, teachers or family what EPP is?
No, but sometimes they ask so many questions, that I don’t even know the answers to.
What do you tell them?
“I have a rare condition called EPP. It’s basically where I can’t go in the sun or else, I will feel like fire is on my skin. It starts as a tingling feeling, but when I use a cold washcloth to help with the burning, it turns my skin red, and it really hurts. Eventually my skin will peel from the moisture. Because I can’t go in the sun, my skin is very pale.” Even though when I was younger, I just shortened it to “I’m allergic to the sun.”
What things do you do if you feel sad or left out?
Sometimes I get sad. It’s sad seeing my friends and siblings play outside and how I’m stuck in the house. But my parents always know what to do when I’m sad.
What do you want to be/do when you grow up?
I want to be a famous actress or a famous author writing fiction books
What advice can you share to help other kids that have EPP?
It may be hard when you get flare ups or when everybody else is in t-shirts and shorts and you’re in long sleeves and pants, but don’t let that bring you down.
Parents- How do your children deal with their EPP? (flare/pain)?
Morgan deals with the pain by avoiding the outdoors for a while, using a damp washcloth on the skin where it hurts and taking a cool bath. She will sleep with a fan on her at night.
Would you benefit from a new treatment? If so, how would it help you?
Morgan, like other kids with EPP, would benefit greatly from having a treatment for her condition. She could finally swim in the middle of the day, when the sun is warmest, and could actually go to the beach other than sunrise or sunset. Treatments for EPP would completely change Morgan’s life for the better.
