Carina walks barefoot along the beach until she reaches the sea. She dives in, swims out with big strokes and enjoys the cool water on her skin. And then she has to hurry: Because the sun is about to rise - and she has to be back in her hotel room by then. Because when everyone else leaves for breakfast, Carina will be reading a book or sleeping behind closed curtains. She won't go out again until the evening, after sunset.
"Going to the outdoor pool or beer garden is impossible for me"
"Even in winter, just one minute means that I can still feel my skin hours later," says the 36-year-old. "If I stay in the sun for longer, I have severe pain for two to three days despite wearing protective clothing." Sometimes the pain is so bad that Carina has to retreat to her darkened bedroom. "I don't want to see anyone, I'm physically exhausted because the pain doesn't allow me to rest, let alone sleep."
It started in childhood
Carina showed the first signs of the rare genetic defect as a baby: "I was nine months old when my parents took me on vacation to the Baltic Sea. As soon as I was outside, all I did was scream. My parents couldn't work out what was wrong with me - because the pain with EPP starts when nothing is visible on the skin." When she was two and a half, her parents took her to see a dermatologist. "She referred us to a university clinic - where we were diagnosed with EPP just a short time later." Quickly, as Carina now knows from other EPP sufferers, some of whom waited decades for the correct diagnosis.
All attempts at treatment remain unsuccessful
Carina is treated with beta-carotene tablets. "They turned my skin orange, but the pain remained." However, there was no other treatment for the little-researched disease at the time. So Carina took two to six tablets a day. She spent most of her childhood indoors. When she did play outside with other children, she had to put up with the fire on her skin for days on end. "When I was 14, I had enough of swallowing tablets - and stopped taking the medication." As there were no alternatives, Carina spent the next few years researching on her own on the internet and looking for other sufferers. "In my early 20s, I was finally connected with some of them. It was so good to talk about how other sufferers alleviated their pain, how they protected themselves from the sun and which doctors they had already seen. It also gave me the feeling that I was no longer alone." In order to further expand contact with other EPP sufferers, Carina became a founding member of a self-help association.
I'm not giving up hope
Carina has now been trying a new hormone implant for four months - the only promising therapy currently on the market. "Unfortunately, the medication hasn't helped me so far - my skin is slightly more pigmented, but the pain has remained the same. However, I know from other sufferers that it only worked for them after the second or third application, so I haven't given up hope yet. A little relief in everyday life would be enough for me ..."
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