It can be baffling to others, and it’s pretty serious kryptonite for someone who lives through frigid winters in western Canada. But it’s true: I am allergic to the cold. Specifically, I live with cold contact urticaria (CCU), and even though I don’t fall to the ground in a writhing mess when exposed to wintry conditions, I do break out in itchy, mortifying hives. For some however, cold urticaria can even be life-threatening.
When I spoke to cold urticaria expert Dr. Martin Ostro, his first recommendation was for this northern girl to move to a warmer climate. Sadly, relocating to the tropics isn’t in the cards for me, so instead I’ve invested in a gargantuan winter wardrobe along with a steady supply of antihistamines. I’m lucky; the severity of my cold urticaria has waxed and waned over the years since I first had a reaction at age 9.
In childhood and my teenage years, I had to hatch escape plans for when the raised hives would appear – whenever I got chilled or skin was exposed to cold. As an adult, I learned how to manage the condition so that Old Man Winter doesn’t call the shots. But for others managing cold urticaria – with its perplexing age of onset from babies to seniors – the kryptonite can be even tougher to avoid.
Take 8-year-old Adel Schneider, who had her first reaction when she was only 15 months old. Her grandparents had taken her sledding – her first-ever outdoor winter adventure, when within minutes of being outside, her face started swelling. Soon, they couldn’t make out her facial features. A dose of Benadryl helped the swelling subside. Afterwards, her mom, Kara Schneider, took Adel to their local allergist in Appleton, Wisconsin, where she had been diagnosed six months earlier with a severe dairy allergy.
To determine if Adel had CCU, the allergist performed an ice cube test, which typically involves placing ice on the underside of a patient’s forearm for five minutes, or sometimes an ice pack is applied to the back. When Adel’s skin reacted to the ice, she was diagnosed with cold urticaria and angiodema (deep swelling, usually around lips and eyes).
“He was kind of excited since it is rare – I was not,” recalls Schneider. Cold urticaria is an uncommon condition, with an incidence of only 0.05 percent among the general population, according to the few review studies on the subject.
“We live in Wisconsin,” adds Schneider. “My child can’t eat dairy and now she can’t go outside! Are you kidding me? But we just had to adjust to our new normal.”
Adel was prescribed cyproheptadine (a first-generation antihistamine used to treat allergic symptoms including hives and itching by blocking histamines and serotonin), and continues to take it twice daily. Her last outbreak was two years ago, when her hands were exposed to the cold. “They swelled up like balloons,” says Schneider. “Now we don’t let her go out below 40 degrees F. We know when she is about to have a reaction because her skin burns before she gets the hives and swelling.“
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The Schneiders work diligently to manage Adel’s condition. She is completely covered up when it’s cold out, and rushed to and from the car. “We really take every precaution and hustle her in,” affirms Schneider. While Adel’s early onset has meant she’s had to deal with cold urticaria her whole life, she also doesn’t know any different. Luckily her school accommodates Adel’s needs, for example by providing indoor recess.
“She’s really fortunate that the school and her classmates have been extremely willing to become educated and adapt for her,” Schneider adds.
Ostro, a clinical associate in the division of rheumatology, allergy and immunology at Massachusetts General Hospital in Boston, says limiting exposure to cold is essentially the only effective treatment for cold urticaria, which is not a typical allergic disease in that there is no specific IgE, the allergy antibody, which responds to a particular substance. Instead, cold urticaria occurs upon “cold activation of a set of immune cells in the skin and elsewhere, called mast cells,” explains Ostro. “On activation, the mast cells release histamine, which causes the skin to become itchy, red and swollen.”
In most cases, the reasons why someone develops cold urticaria aren’t known, although Ostro adds that “up to 50 percent of patients with CCU have a history of allergic conditions,” which certainly holds true for Adel. That means taking extra steps to manage additional risks, her mom notes.
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