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
   (Shutterstock)

(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."

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JERZJOE
Jun 10, 2014 7:25 AM CDT
the only ALLERGY the voters are ALLERGIC to is the DUMOCRATS!! and that ALLERGIC reaction to solve this will be in the NOVEMBER TO REMEMBER cause that's... When the DUMOCRATS LOSE & the REP WIN BIG on NOV 4, 2014!!!! CAUSE THE LEGAL USA RESIDENTS VOTERS KNOWS THAT,,,!! America is worth fighting for, to ensure future generations enjoy the same opportunities we’ve had to gain an education, get a job, start a family and live in peace, **UNHARRASSED BY A MEDDLING,CENTRALIZED MONOLITHIC GOVERNMENT IN TODAY'S USA***!!! ALSO.. Then in Nov. 08, 2016 Gov. Christie will be prez!!!! and everything will be AOK in the USA on Jan 20, 2017!! there ya go!!
lidex
Jun 10, 2014 1:37 AM CDT
Knowing you had this condition, why would you have children?
Ezekiel 25:17
Jun 9, 2014 9:33 PM CDT
Wow, this is right out of the movie, "Dark Side of the Sun." A young Brad Pitt hadn't really been found yet. A local producer and writer, Andrew Horton knew Pitt was wanting a breakout roll. So in the story, Pitt has EPP and has to wear a space suit anytime he goes out in public. The movie was filmed in the former Yugoslavia just before the outbreak of all out war. Toward the end of filming and pickups, there was already armed skirmishes from the ethnic cleansing of muslims. Having to flee the region meant that working negatives were lost. It was going to be a wash. But thankfully someone had managed to gather up all of the negatives and get them back to the producer so the movie could finally be cut and finalized. The delays caused a bit of turnaround and they shopped it with the film markets including the biggest LA based American Film Market. That's where people set up in hotel rooms and prints are ran at a local participating theatre. Then potential buyers visit the hotel rooms to secure distribution deals for their area or cable channel. They did sell the rights to IFC and other medium sized distributors.