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When she does venture outside, she’d get funny looks from strangers – unsurprisingly, as she’s covered in layers of protective clothing, a hat and a scarf covering her face.
Her friends often good-naturedly tease that she’s descended from “vampires”.
Julie Rohrdanz (45) from Marshalltown, Iowa in the US, suffers from polymorphic light eruption – she’s highly allergic to sunlight.
When her skin is exposed to it, she quickly develops a red, itchy rash. It can take up to a week for the rash to clear up.
Her mother, Sally Riedell, and her grandmother Sally Ontiveros also suffer from the condition, but Julie’s case is extreme.
“I wear large-brimmed hats, face masks, neck protection, long sleeves, gloves and, of course, long pants. Eye protection can be a bit tricky, because, well, I have to see,” she recently told Metro.
Her skin has become progressively light sensitive over the years, to the point four years ago when exposure to even weak sunlight would burn as if she was “standing too close to a fire”.
She says her condition has gotten to the point where even certain types of indoor lighting – the kind that mimics sunlight – will bring on the rash.
“Polymorphic” means she’s allergic to both UVA – which penetrates deeply into the skin – and UVB rays, which burns the skin’s surface.
She recently found some relief from her symptoms when doctors prescribed her hydroxychloroquine, traditionally a malaria prophylactic and medication.
Since starting the treatment, she was able to go outside on a hot day for the first time in years wearing just a short-sleeved shirt. “It was brilliant,” she says.
“The sun is strong – but I’m stronger,” she jokes, adding that she knows there’s a long road ahead.
Julie, a sales manager, and her engineer husband, Nick, are grateful for one thing: There’s no indication their daughter Grace (17) has inherited her mom’s “vampire” gene.
Sources: Metro UK, skinsupport.org.uk,tv3.ie
