How old were you when you were diagnosed?
3 years old. My dad and half-sister have EPP also. So, we already knew there was a chance that I could have it.
Do you remember your first flare/reaction?
Yes, it was on my feet, followed by my hands a few months later.
What did it feel like to you?
My first symptoms were on my feet. I remember screaming my feet hurt so badly. I was trying to scratch them to make the pain go away. I remember just starching as hard as I could and screaming because the pain was so bad.
What things help you feel better? (Cool water, ice, shade, bath, clothes)
Cool water, cool wash clothes, fans, and to sleep I take Benadryl
How long does it take before you start to feel better?
What kind of clothing/trends do you wear when you go outside or in bad lighting? Long sleeves, shoes and socks, a hat, my hands must be 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 play volleyball…for my school and travel volleyball. I always play inside during the day. I love to watch college football. We live in a college town and we can only go to the games if they are night games.
What ways are you able to adapt to do certain activities outside?
I just stay inside. I hate how I feel when I get to much sun so I just stay inside.
What fun things are you able to do inside your home while the sun is out?
Play with my sisters or hang out with my friends, watch Grey’s Anatomy, bake, play pool or air hockey in our garage, hang out with our horse in the barn.
What has been the best vacation ever?
When I went to EPP Camp in Texas
Have you met any other kids with EPP before?
I met several people in Texas with EPP. In addition, my dad and my half- sister have EPP also
Do you go to School/Homeschool?
Go to school. I tried homeschooling, but I did not like it
Do you have to go by car, bus or walk?
Go by car
What things do you have to do to protect your skin?
I use a sunscreen called Total Block that helps me get to and from the car on sunny days. Other than that, I avoid the sun. In school for PE if my class goes, outside and I cannot then I do PE class that day on virtual academy online. In school, I do not sit by the windows. For fire drills etc. there is a special plan made for me so that I am not standing out in the sun. My school really goes beyond to make it possible for me to attend public school. In elementary school when I had to ride a bus, all of the bus windows were tinted for me. Our car windows are tinted to protect me.
Is it hard for you to tell your friends, teachers or family what EPP is?
At first yes. Because EPP is so rare, I always felt like they did not believe me. When I went to my high school for my freshman orientation, the PE teacher was talking about going outside and changing clothes for PE etc. She made the comment “yes I have heard every excuse in the book of why kids cannot participate in PE. She said I even had someone tell me that they were allergic to the sun. I raised my hand and said I am allergic to the sun. So then, we had to come up with my plan and my teacher apologized and said she would never use that as an example again.
What do you tell them?
By now most of them already know. It is in my record that follows me all the way through school. When I was younger, my mom would always have a meeting and explain it for me, and then tell me what I was supposed to do if there was a fire drill or whatever, but now that I am in high school, the plan pretty much just stays the same. I think it is easier this way because I do not have to explain it all the time now.
What things do you do if you feel sad or left out?
I feel sad and left out when all of my friends are at the beach in the summer. No one wants to take someone that is allergic to the sun. Or when they are the community pools on a hot summer day, and I am inside. Or when my cousin or little sister is playing a softball game and I must sit in the car or stay home because there is no shade for me to be able to watch them.
What do you want to be/do when you grow up?
I want to get a degree in child phycology and become a child life specialist or social working in the hospitals. Or I may also do something with sports medicine. I am not 100% sure yet.
What advice can you share to help other kids that have EPP?
Know that you are not alone. There are camps and FB sights where you can get to know and meet others your own age that is going through something similar. If you can definitely go to EPP Camp! I had so much fun for that week I was there. That was probably one of the best weeks of my life. Do not feel peer pressured to hang out with friends in the sun just because they want you to. You know how your body feels, when you have to much sun, the pain, and how nothing really helps. Do not put your body through that. My favorite quote “Don’t Tell Me the Sky is the Limit When There are Footprints on the Moon” You can do anything you set your mind to and do not let anyone tell you different. Listen to your parents when they say you cannot go outside yet. They are not doing it to be mean. They are doing it to protect you.
Parents- How do your children deal with the pain/reaction/flare?
Ashlynn tries to avoid the sun at all costs. I am in tears when she gets too much sun. We point fans directly on her and apply cool wash clothes. I use Benadryl to help her sleep. Pretty much all we can do. We use Total Block sunblock to go shopping and get her to and from the car or the car to school etc. She is afraid to try most of the clothes because she has tried some in the past that has not worked, and she hates the pain she is in from too much sun.
Would you benefit from a new treatment?
My dad was part of the trial for SCENESSE. He had his first sunburn in 35 years, and only felt the reactions of a normal sunburn. I so wish this treatment would be approved in the US. It means many kids and teens can lead a normal life. I know so many friends I have met along the way talk about being made fun of and joked about. Thank god, that has not happened very often to me, and when it has my sisters or friends are right there to stick up for me. Last year in 8th grade, one boy kept calling me a vampire. People can be so mean sometimes. I really wish the people who must make the decision would think about their children or grandchildren having EPP and maybe they would understand what it would be like trying to live the way we have to. Maybe they would hurry up in their decision-making process.