I was diagnosed with EPP at the age of 12. After enduring the worst reaction of my life while participating in a weekend softball tournament (I really hated playing softball, too!), my mom started seeking answers to what was happening to me and why, and the journey to my diagnosis began.
It took me a long time to get used to having EPP, and to learn what preventative measures worked for me. I also had to learn how much sunlight I could handle before a reaction set in. This was really hard. 23 years later, I still have days when I think I will be ok in a bit of sunlight, and the next thing I know I'm kicking myself for allowing a reaction to occur.
This is what happens to me when I am exposed to too much sunlight for too long of a time period: I feel an intense burning sensation in my hands, feet, and/or face. When trying to cool the areas, I feel an extreme tingling sensation if I am applying something that is too cold. I need to find a happy medium. My skin is also very sensitive during this time; a simple bump or scrape against an object leaves a lasting, uncomfortable tingling sensation. A bad reaction can take days to go away. In the summer, even if I'm very careful, I have come to terms with the fact that I will always be living with a slight reaction here or there. Unless I want to just hide inside every day.
What works for me: I am a firm believer in sunscreen, not just because of EPP, but because the sun is so damaging to our skin and it's so important to take care of it. I have spent a lot of money on good clothing with SPF and hats, and I can be seen carrying an umbrella (my "sunbrella" as I call it) at times. The best thing for me to do is simply stay away from the rays.
I struggled a bit growing up, and did feel lonely at times. However, the worst part of having EPP in my adult life is the fact that I cannot play or swim with my daughter in the summer. I get to sit on the sidelines, hiding in my shade, while I watch my husband enjoy all of those things that I wish I could do.
This disease has taught me a lot. Most importantly, I realize that I am very lucky. There are many others who suffer far worse than I do when exposed to sunlight. EPP is mostly a huge inconvenience in my life, but it’s something that I’ve accepted. So, if you see me running desperately to the shade or hiding under my hats and umbrella, don’t feel bad for me or think I’m weird. That’s just me living with my “sun thing.”