What It's Like to Be Allergic to Sunlight

Condition makes life lonely and complicated, sufferers say

By Neal Colgrass,  Newser Staff

Posted Jun 9, 2014 4:12 PM CDT

(Newser) – A mother and her 13-year-old son in England suffer from a rare allergy that turns sunlight into a source of agony. It's called erythropoietic protoporphyria (EPP), an enzyme deficiency that makes the skin's nerve endings hyper-sensitive to UV rays. Exposure can cause itching and pain, and at times swelling and fluid leakage when blood vessels are affected, the Daily Mail reports. Claire Turner, 50, admits she was "devastated" when she learned her son Sam had the hereditary condition, too—so severely that even low-energy light bulbs can cause him issues. "We’re like a vampire family—we can’t come out in the sun and live our lives in the dark," she says. "If I stay in the sun for longer than a few minutes it feels like somebody is pouring boiling water over me." Claire carefully plans their lives, seating them in restaurants away from windows and avoiding holidays in hot countries.

"It's hard for Sam," she says. "It's something we'll both have to live with for the rest of our lives." A small positive: They've received support from the British Porphyria Association and give talks there about dealing with the disease. Georgina Davies, another British sufferer, spoke up in the Guardian about how hard life is with EPP—which even forces her to avoid TVs and computer screens, which also emit UV light. "The emotional impact is the worst," she writes. "While my marriage is strong" and none of her four children have EPP, "not going out much means it's difficult to make friends," and the floppy hat, sunglasses, and gloves she often wears indoors "make people think I'm peculiar." At least, she says, she has gained physical strength by taking vitamin D pills and she's met others with the condition on Facebook. "For the first time, I have friends who truly get it."

  (Shutterstock)
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