I have EPP and was symptomatic as an infant. Diagnosed with EPP around 10-11 years of age by a Dermatologist in Southern Oregon via urine and blood samples and a skin biopsy from the top of my hand while symptomatic. Symptoms include the red-purpleish discoloration of exposed skin, swelling, tingling, pain, and little tollerance to tempature variances. It also meant that I was trapped in an air conditioned house for about 7-10 days and resolved to catching up on sleep when the pain was gone. I used to take Solatene which is no longer available in the US and have since switched to taking Lumitine mfg. by the Tishcon drug company. I start the Lumitine regiment early spring and continue through summer end. Although the Lumitene works for most people with EPP, it has not helped me as much as I would like. The palms of my hands and bottom of my feet turn orangish, and if I get a routine cut/scrape on an area that has sun damage the sore takes a very long time to heal and usually will scar. I've found protective clothing to be very helpful.
Now in my mid-30's, and as a young adult, I find ways of enjoying the outdoors while staying protected. As a teenager, I learned to use humor to explain why I couldn't spend much time in the sun, I had to protect my "moon tan" and that I liked to lay out under the stars. I still use humor as an adult explaining that I was born a century too late, I should have been in the Victorian days with the long sleved dresses, fashionable fair skin, and parasols (little lacy umbrellas). I downhill snow ski, scuba dive, and white water raft. With EPP you have to plan the outing and work the plan. Don't underestimate the power of UV rays reflecting up from sand, snow, or water.
I knew with EPP there would be a 50% chance of our children getting EPP, but so far neither of them have been symptomatic. One has been tested and the other has not. In retrospect, I wouldn't have tested our first child as young as I did. I would have waited until at least over 2 years of age. It was difficult to get urine, stool, and blood samples from someone so little and unable to cooperate. I do keep a close eye on them when outside in hot weather and look for the familar symptoms, but thank God have not seen any yet. Whatever the final outcome, our family together will find ways of coping and compromising and I know that having a family was the right choice and a bigger blessing than I could have ever imagined.
I don't care what others think of me when they see me in a full body wet suite, gloves, dive shoes, and wide brimmed hat riding the rapids. I believe life is meant to be experienced, and I take on the challenges to find creative ways to enjoy activities outdoors while not jeopardizing my health.
However, be warned. Being complacent and a little over confident got myself burned this summer on the hands and face. My iron levels were below the normal range and porphyrian levels were elevated. That's why the severity of this reaction turned me back on to APF, and I was encouraged to connect with others through the In Touch meetings. It's nice to know of others outside of my family who are coping wth EPP and I encourage you to reach out—we all have a story to share and blessings to count.