Allergy to Cold Means Young Boy’s Life is Mostly Inside

Rare condition, cold urticaria, can cause myriad of problems

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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.
 

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wannaknow said on Thursday, Mar 8 at 1:30 PM

If he's allergic to cold is the family planning to move to a warmer state?

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JenAK said on Thursday, Mar 8 at 3:33 PM

That is what I was thinking, why expose the child to Alaska where it is cold 9 month out of the year and even then some summers are far from "warm" ones. When there are plenty of states that could offer him so much more.

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Nammajamma said on Saturday, Mar 10 at 10:23 AM

I hate to pass judgement on these poor folks, but if he were my son I'd use the diagnosis as an excuse to move to Palm Springs or Florida. He's not going to have much of a childhood in Alaska, where it's cold most of the year.

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Jess said on Thursday, Aug 16 at 2:02 PM

I too have this condition. Moving will not help. I live in Oregon, air conditioning is just as bad as cold weather. Its hard to not be able to go to the grocery store or the movies due to air conditioning. I was diagnosed at age 3 and have had it for over 20 years! Good luck Landon, know that you are not alone!

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