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#NPAW 2018 Meet Ben Edwards A Youths Interview With EPP

#PAW2018
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Ben Edwards    Age: 10

  • How old were you when you were diagnosed?
    I was two years old.
  • Do you remember your first flare/reaction?
    I was at the beach building a sand castle near an umbrella, I was getting really agitated.I then started to feel horrible and then bad, I looked down at my hands they were swelling up and turning to a red & purple color-like a rash.

  • What did it feel like to you?I felt like everything I was touching was burning my skin.

  • What things help you feel better? (cool water, ice, shade, bath, clothes)
    Having a wet substance/cloth around my hands or anywhere my body hurts.I have even used wet socks before and now I use the Frog Toggs those stay cold longer.Putting it under water and blowing on it when I don’t have water near me.Also using a fan.

  • How long does it take before you start to feel better?A few days, but my first and worst reaction took a week for it to go away.

  • What kind of clothing/trends do you wear when you go outside or in bad lighting?
    I always wear long sleeves no matter the temperature outside.  I also wear pants.  If its hot outside, I try to wear shirts with wicking fabric that keeps me cool.  I use a hat with a flap on the back to cover my neck, even though I don’t enjoy wearing it.  In the snow I use a face mask.  I wear gloves to cover my hands from the sun, especially when I stay outside for a long time.

  • 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 to participate on the swim team/swimming.  I get to swim indoors and at night, but swim practice is early enough in the morning that it doesn’t bother me to much.

  • What ways are you able to adapt to do certain activities outside?I try to stay in the shade& wear the right clothing.  For instance, when I go to Glenwood Springs School their pool is open until 10pm so I can swim at night.

  • What fun things are you able to do inside your home while the sun is out?I like to build with my Legos, watch movies, play video games, read, write and draw.

  • What has been the best vacation ever?I loved Legoland.  But my EPP was bad there, the sun hurt my hands, so I was not able to enjoy the Park as much as I wanted to.

  • Have you met any other kids with EPP before?No

  • Do you go to School/Homeschool?Elementary School

  • Do you have to go by car, bus or walk? Bus

  • What things do you have to do to protect your skin (In school) or (taking the car or bus)?For school and taking the bus, I wear long sleeves and long pants.  My mom insists on me wearing a hat and gloves, at recess in the spring and fall, I don’t want to but I know it’s for my protection.  My hands always seem to end up hurting the most when it’s bright outside.  In the winter it’s not too bad for me.

  • Is it hard for you to tell your friends, teachers or family what EPP is?No, not hard, they always forget because I have a mild case.

  • What do you tell them?I tell them I have a condition where if I’m out in the sun to long my hands will start itching and swelling up.  It gets bad and swollen- I just don’t like that.  When I was younger I used to tell people, I was allergic to the sun because they understood that a bit better.  My mom sends information from the APF to my teachers & share Jared Ulmers videos about EPP.

  • What things do you do if you feel sad or left out?I sit in the shade with a friend, or I go play video games.

  • What do you want to be/do when you grow up?I want to be a video game programmer

  • What advice can you share to help other kids that have EPP?Stay in the SHADE!  When my Dad is walking the dog in the park, I will jump from one shady spot to another.

  • Parents- How do your children deal with their EPP? (flare/pain)?As Ben gets older, he doesn’t tell us how often he’s in pain, so he’s deals with it on his own.  If he’s really hurting he asks for a wet cold cloth or fan.

  • Would you benefit from a new treatment? If so how would it help you?Yes, I would if it doesn’t change my appearance.  I don’t want to be tan.  It would also help me to be out in the sun more, especially at swim meets & swim team.  Id love to be able to go outside and not feel pain.  I could go to places that I enjoy like LEGOLAND, always being able to do whatever I wanted to outside.

Thank you Ben for taking the time and sharing your examples of how you deal with EPP!  Enjoy your swimming and swim team!  I know you’ll be a great Gaming Programmer.
  

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