This FCAS Blogger Discovered Something Cool

What do this woman…

Source: Blogspot

 

and this woman…

Source: ksl.com

 

have in common?

Well, besides the obvious similarities between their beautiful blonde locks, both of these woman share an unusual connection: familiarity with a rare allergy to the cold.

“Gel,” writer of the blog “Gel and the Boys” and woman number one, came across an article on a then local Utah news station. The article told the story of Jaylyn Rogers (the lucky lady of image number two) who struggles with an allergy to the cold–almost any cold.

Take an ice cube and hold it against Rogers’ skin, and you can watch that spot start to swell. Her reactions to cold air, weather, and water, in the article’s words, are “severe” and range from hives to being lightheaded.

Sound familiar? Though Rogers is diagnosed with Cold Urticaria, it’s not so far from the inherited version, Familial Cold Autoinflammatory Syndrome, and it’s not far at all from the symptoms Gel has seen in her own husband, Darrell!

Like Rogers, Darrell has been known to develop hives and show a real sensitivity to cold air. As Gel describes, “It’s such a bizarre thing. For Darrell it’s not always the cold that he is allergic to, but also being wet and then drying in cooler air.”

The similarity between her husband and Rogers stuck out so much to Gel, that she immediately shared the article with her readers. And the readers shared back! One, known as “shashank,” even went ahead and posted a resource for more CAPS information.

Just like that, information and awareness about Familial Cold Autoinflammatory Syndrome and Cold Urticaria is being spread, which was probably Rogers’ intention considering she joined a drug study about the condition.

“The incentive to the study is the possibility of actually doing something about this,” said Dr. Gerald Gleich, with dermatology research at the University of Utah.

But no matter what happens with the study, at least we can say that Rogers’ involvement has already done something–its brought more CAPS information to a family that didn’t even know to look for it.

And that’s pretty cool.

Click here to watch a video about Jaylyn’s experience with FCAS!


Kiki Jones

Kiki Jones

Kiki’s family loves to say, “People are like a baking project. At some point, they’re just done and they’re who they’re going to be.” Well, Kiki still has some baking to do, and she learns a lot from her loved ones living with chronic conditions, including mental illness and Behcet’s disease. With a BA in English, she’s using her skills to tell the stories of people like them.

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