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Allergy to Cold Means Young Boy’s Life is Mostly Inside
Rare condition, cold urticaria, can cause myriad of problems
By Alexis Fernandez
ANCHORAGE - Almost every Alaskan parent will repeat – hundreds of times – the words, “come in from the cold.”
But Michelle Crow won't.
“He may look perfect like there’s nothing wrong, but inside his poor body is just fighting against itself on a daily basis,” Crow said of her son, while she looked outside.
Her son, Landon, spends almost every day inside with his grandpa.
Crying, Crow said, “No parent wants to see their child go through any of that.”
Because he can't play outside.
Landon suffers from a rare medical condition, known as cold urticaria.
It's a disease that causes him to break out in rashes, swell, or even go into shock if he's exposed to anything with a cold temperature for too long.
“It's something that he's going to have to deal with the rest of his life, and can cause a lot of other problems, hearing loss, vision loss, all go along with it,” Crow said.
Dr. Jeffrey Demain is a longtime allergist with the Asthma and Immunology Center of Alaska.
He says Landon’s disease can be a fatal condition that one is either born with or can develop.
“It can also be associated with developing an infection, which may occur during young adulthood. It may associated with increase in autoimmune disease,” Dr. Demain said.
It's not a new condition, the first reports of the disease were back in 1860s. Still, there isn't much research and no cure. The mildest form can last several years, while the most severe can last a lifetime.
It's something that's very treatable, and again there’s such a large spectrum,” said Dr. Demain.
Doctors diagnosed landon back in October. A shot each day keeps his symptoms under control.
His parents say although his future is uncertain, they know it will be different from other kids.
“It’s sad to think that recess, field trips, they’re all going to be limited for him, but we'll have alternatives for him,” Crow said.
For now, back inside, Landon has no worries, except for when grandpa will have his lunch ready.
