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Winter in Charlotte, North Carolina, is not known for its snow storms. But last year was different, so Makayla Lawrence, now 14, went outside to play. She didn’t last long.
“She came in and she’s like, ‘I’m itching really bad,’” remembers her mom, Rachael Lawrence, a stay-at-home mother of four who told her daughter not to worry – her body was just warming up. But when Makayla started ripping her clothes off to reveal “giant hives forming everywhere” and complained of a tight throat, Lawrence knew something wasn’t right. She took Makayla to the hospital, where she received antihistamines and steroids for an allergic reaction, but no one knew what she was allergic to.
A few weeks later, Makayla played in the snow again – and wound up in an ambulance to the hospital after her pediatrician gave her epinephrine to combat the reaction. Still, the family had no answers.
“We were trying to figure out what was going on,” says Lawrence, who retraced her daughter’s eating and other steps. She recalled Makayla getting hives after wearing a skirt in a breezy Veteran’s Day parade, but the pediatrician dismissed the possibility of a cold allergy as “too rare,” Lawrence remembers.
But when Lawrence took Makayla to an allergist, he said, “You really can be allergic to the cold” and diagnosed Makayla with cold urticaria, the medical term for the condition. “We had never heard of it before,” Lawrence says.
Cold urticaria, a skin reaction to cold temperatures, affects less than 1 percent of the population, mostly children and adolescents, research suggests. Fortunately, it usually passes in a few years. While severity varies widely, people with the condition can break out into itchy hives soon after they step out in the cold, grasp an icy drink or jump into a cold pool.
Some people react only where the cold hits their bodies, and others like Makayla break out all over. Some people can even have digestive issues when eating or drinking cold foods or beverages, says Dr. Bryan Martin, an allergist-immunologist in Columbus, Ohio, and president of the American College of Allergy, Asthma & Immunology.
“Cold urticaria falls under a really confusing group of conditions called ‘physical urticaria’ – reacting with hives to physical things,” such as physical pressure, sunlight or water, he says.
Usually, cold urticaria has no known cause, but in rare cases, it’s hereditary, according to the National Organization for Rare Disorders.
More than unattractive or uncomfortable, the condition can be life-threatening. People’s throats can close up if they gulp, say, a Slurpee, or they can drown if jumping into a chilly lake sends them into anaphylactic shock . “The large surface-area exposure [of the skin] to the relatively cold water – that’s the danger we constantly worry about,” Martin says.
Lawrence knows the feeling. She worries about Makayla at school, where peers and teachers might not know how to use an EpiPen, and at home, where even opening the door to let the dogs in can cause a reaction. She has even worried about her daughter at her church youth group gatherings, where leaders doused kids in ice water as a part of the ALS Ice Bucket Challenge last year.
“You become overprotective,” Lawrence says, “because you’re like, ‘This is insane. How do I stop it?’”
Diagnosing cold urticaria is simple: An allergist places an ice cube on a patient’s skin for a few minutes. If a hive or hives appear soon after, the patient is allergic to cold.
But getting people who have the condition to see an allergist for testing isn’t so simple. Often, they end up in dermatologist’s office instead, thinking their reaction is to food or medication, says Dr. Bruce Robinson, a dermatologist in New York City and spokesman for the American Academy of Dermatology. But getting a full evaluation by an allergist is important, Martin says, because the condition can be treated and is often accompanied by other allergies.
The common belief that a cold allergy isn’t real or serious can also deter people from getting diagnosed. “Are you sure you’re not just making this up?” someone asked Lawrence just last week after she requested a door to be shut at a doctor’s office because the cold air was giving Makayla hives. Makayla’s peers – who have bullied her because of her allergy by trying to throw water down her back or convincing her to go outside in the cold or rain – are no help. Even Makayla doesn’t fully grasp the severity of her condition, sometimes leaving the house without a coat in order to fit in.
“Everyday life is difficult, and people don’t believe her, which makes it worse,” Lawrence says, noting that her daughter sees a therapist to help cope with the condition’s social challenges. "People just think she’s crazy.“
But she’s not. "It’s real,” Martin says. “It’s not just, ‘I’m uncomfortable with the cold.’”
Questioning the legitimacy of cold urticaria – or any allergy, for that matter – doesn’t help, he adds. “This, ‘I don’t believe,’ and this, ‘It’s only allergies,’ are both the sort of the bane of [allergists’] existence,” Martin says, “because sometimes they really are life-threatening.”
Like all allergies, the best way to treat cold urticaria is by avoiding the allergen (in this case, the cold) and carrying an EpiPen when that plan fails. It’s also important for parents to make sure that teachers and chaperones know about the condition and how to use an EpiPen, Robinson says. “Children aren’t always going to be the best advocates for themselves, and often, they won’t think before they do things,” he says.
But while covering up in cold weather, saying no to ice packs and ordering drinks with no ice can help, “it’s hard to escape cold in our society,” Martin says. Even moving to Florida wouldn’t cure Makayla’s condition, Lawrence says, since a cool breeze, an air-conditioned store or other “things you never think about” like caring for her pet rabbit outdoors could set off a reaction.
That’s why allergists often prescribe a daily antihistamine to people with cold urticaria to dull their reactions when – not if – they interact with cold. Makayla, for one, takes Zyrtec daily and Atarax during a reaction, although even high doses don’t entirely clear up the hives but do keep her throat from swelling closed. “They’re still trying to find an underlying cause for it being so severe,” Lawrence says.
Until then, there’s hope. Just take it from Eve Graves, a 50-year-old in Duluth, Minnesota, whose allergist told her she had a cold allergy in her teens. While the hives have since subsided, Graves has other medical conditions, including Raynaud’s disease (which causes parts of your body to go numb in response to the cold), chilblains (skin sores or bumps in reaction to cold air) and exercise-induced asthma, that make her particularly ill-suited for cold weather.
Still, there’s nowhere Graves would rather be than Minnesota, where she coaches trail running and Nordic skiing. “I love being outside in the coldest of the cold,” she says. To cope, she uses products such as Warm Skin, a lotion that holds in body heat, and Lungplus, a breathing device that converts cold air into warmer, more humid air. (After trying Lungplus, she became a representative for the company, which is based in Sweden.) She also triples up on fleece mittens, doubles up on hand and foot warmers and wears heated socks.
“Anyone can do stuff in any conditions,” Graves says, “it’s just a matter of how they adapt.”
By Anna Medaris Miller for U.S. News