How old were you when you were diagnosed?
5 years old.
Do you remember your first flare/reaction?
What did it feel like to you?
It was a constant burning pain that was beneath my skin.
What things help you feel better? (cool water, ice, shade, bath, clothes)
Ice water only works while my hands/feet are in it. I have to be in darkness constantly or it will start all over again.
How long does it take before you start to feel better:
3 to 5 days.
What kind of clothing/trends do you wear when you go outside or in bad lighting?
Long pants, long sleeved shirt or sometimes a short sleeved shirt with a jacket, cardigan or sleeves. I always have gloves and a hat with me too.
What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
I take Taekwondo classes which are indoors. Most classes are in the evening. Sometimes the lights bother me, but usually only if I’m sick or I’ve had too much sun/light already.
What ways are you able to adapt to do certain activities outside?
We have guest assistance passes for theme parks so we get done with the rides quicker and we go early morning or late evening usually. We do indoor activities in the summer like movies and outdoor things like crazy golf in the winter. I get to have fun.
What fun things are you able to do inside your home while the sun is out?
I like watching T.V., drawing, reading, playing games with my brother, building Lego’s and occasionally video games.
What has been the best vacation ever?
Washington D.C. because it was 90% inside and the monuments were beautiful at night!
Have you met any other kids with EPP before?
Yes, at Camp Discovery, and the APF meeting at the FDA, and I know another girl in Scotland.
Do you go to School/Homeschool?
Do you have to go by car, bus or walk?
Mostly by car, sometimes I bike with my brother in the winter.
What things do you have to do to protect your skin?
I wear sunscreen and cover up gear.
What things do you have to do to protect your skin (In school) or (taking the car or bus)?
In school I carry sunscreen. I do NOT sit near windows or under lights and carry cover up gear in case of a fire drill etc. We have our car windows tinted so I can relax, but sometimes I hide behind a blanket anyway.
Is it hard for you to tell your friends, teachers or family what EPP is?
No, I talk openly about it.
What do you tell them?
I have a blood disorder that makes me sensitive to light.
What things do you do if you feel sad or left out?
I just deal with it and do something else that I enjoy.
What do you want to be/do when you grow up?
Pursue law or work with animals.
What advice can you share to help other kids that have EPP?
Find a hobby you like and make it work. Think outside the box to make almost any idea possible. Always be prepared and carry your “EPP Kit.” Always cover up, gear, umbrella etc.
Parents- How do your children deal with their EPP? (flare/pain)
She initially wants to run her hands under cold water or use ice packs. Then she gets very tired, wants to sleep but can’t due to pain. She becomes very withdrawn and goes into a dark room alone, often crying even when sleeping. This last 3 to 5 days. After the episode she is extremely nervous of any light exposure for months.
Would you benefit from a new treatment? If so how would it help you?
It would make a huge difference to our family life. My husband and son are involved in Boy Scouts, so it would be great to join them on campouts or their community service projects. I could attend school trips, regular summer camps, birthday parties etc. which I miss out on. I could join the karate demo team which I can’t do now because I can’t attend the day long events outdoors. I wouldn’t have to base her future career on her EPP, I could be a vet or marine biologist like ive always wanted, but I know those would be very difficult. We could be spontaneous parents and not have to plan EVERYTHING around her EPP. It is stressful on the entire family to have to consider EPP first and foremost.
Olivia Thank You for sharing what’s its like to live in a Sunny state with EPP. You are courageous and a determined young lady. We know that you will continue to succeed even with EPP & look forward to seeing how you can help the Marine & Animal Species.