Liz Cooke

Type of Porphyria

Erythropoietic Protoporphyria (EPP)

Hi. I've had EPP since I was a small child but was only diagnosed last year at 48. It is a relief to find out my diagnosis and find others who have it, too. I have two kids, now 13 and 10 years old, who are surfers.  They are all obsessed with the beach, and we live by the sea.  I'm in the UK and have no reaction in the winter months, but I am very careful between April and October. My partner takes them to the beach if it’s full hot sunshine or in the middle of the day.  But we can all go if its mornings or evenings and I wear gloves and long sleeves, and hat. Basically I cover up, and avoid 11am- 3pm sunshine, which is often best for the kids anyway.  I can't really go in the sea in the sunshine (obviously) but can sit on the beach under an umbrella and take a big scarf to cover up.  I just never do all day there, but again a couple of hours is often better for kids anyway. Also I love to be out in late afternoons and sunsets. We adjust our timings to suit me, and if they go and I can't, I am just happy that they are having fun. We even go camping to Southern France, which is great as the pine forest next to the beaches give loads of shade.  My kids haven't missed out at all, although I've had some terrible reactions at times that set me back, but we can find loads of ways to share and adapt. Wishing all you EPP people lots of luck and happy days.