How old were you when you were diagnosed?
I was nine years old.
Do you remember your first flare/reaction?
What did it feel like to you?
I recall it was burning and itching bad.
What things help you feel better? (cool water, ice, shade, bath, clothes)
I use cold water, Ice a fan and a dark room.
How long does it take before you start to feel better?
It takes a day or so.
What kind of clothing/trends do you wear when you go outside or in bad lighting?
I always wear long sleeves. Pants and keep covered.
What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
I do All Star Cheer which is a competition team is and its only done indoors. Next year, I start High School and I would like to Cheer, its outside.
What ways are you able to adapt to do certain activities outside?
I can only do things early morning or late evening.
What fun things are you able to do inside your home while the sun is out?
I love to jump on my trampoline. I play video games to.
What has been the best vacation ever?
Going to the Great Wolf lodge because the water park was inside!
Have you met any other kids with EPP before?
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)
My mom’s car has limo tint so no sunlight gets in.
Is it hard for you to tell your friends, teachers or family what EPP is?
What do you tell them?
I tell them it’s a blood disorder and I can’t be outside for very long time and I need to stay indoors.
What things do you do if you feel sad or left out?
What do you want to be/do when you grow up?
What advice can you share to help other kids that have EPP?
Live your life and don’t worry what anyone says about YOU!
Live each day to the FULLEST!
Parents- How do your children deal with their EPP? (flare/pain)
She cries until the pain is gone. I would love my High School daughter to be outdoors to Cheer, run cross country and live her happy.
Thank you, Savannah, for taking the time and sharing your story. I wish you well when you start High School and enjoy Cheer & Cross country running. I know you’ll be a great Neonatal RN!