How old were you when you were diagnosed?
I was 9 Years old.
Do you remember your first flare/reaction?
No, I do not recall my first flare & reaction.
What did it feel like to you?
It was tingling bad on my skin.
What things help you feel better? (cool water, ice, shade, bath, clothes)
It helps me when I use cold rags and ice packs on my skin.
How long does it take before you start to feel better?
Sometimes, I start to feel better after the first day, but sometimes it takes 2-3 days or longer to feel better.
What kind of clothing/trends do you wear when you go outside or in bad lighting?
I can use long sleeves, hats and umbrellas.
What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
I enjoy playing baseball late in the day and it feels great to play at night.
What ways are you able to adapt to do certain activities outside?
I must cover up, its hot outside so I must take breaks to cool off and other times I just must stay inside.
What fun things are you able to do inside your home while the sun is out?
I love to play on my Play Station.
What has been the best vacation ever?
The Ocean, I did have a few attacks along the way but it was worth it.
Have you met any other kids with EPP before?
I was able to meet a few kids with EPP in Washington D.C.
Do you go to School/Homeschool?
I go to School.
Do you have to go by car, bus or walk?
I go in the car.
What things do you have to do to protect your skin?
I use my sleeves and hats to keep protected from the light/sunlight.
Is it hard for you to tell your friends, teachers or family what EPP is?
Yes, it is hard for me to talk to them about it. I don’t think they could understand.
What things do you do if you feel sad or left out?
I play my games inside the house.
What do you want to be/do when you grow up?
I want to be an Army or Police Officer.
Parents- How do your children deal with EPP?
He mentions that he’s fine and hides the pain until he is unable to handle it anymore. Most days he stays inside and periodically goes out on the front porch to see if he can handle the sun, so he can play outside. For the most part he’s embarrassed of this disease and tries to hide his pain and suffering.
Would you benefit from a new treatment?
He has had no treatment! It would be nice for him to be able to leave the house without his emergency bag (sunblock, different size hats, umbrella, sleeves, plastic bags for ice, sunglasses and extra shirt). It would be nice to go to any event and not check for shade and the closest place to get ice. It would be nice to not worry about vitamin D, Calcium, Iron and liver enzymes. For him to go outside to play and not worry about a reaction to the sun and him breaking another bone would be wonderful.
Thank you Mitchell & Cassie for explaining how you feel about your EPP & how your able to cope when you have a bad reaction. To learn more about EPP read more about it @ www.Porphyriafoundation.org