Mapleton teen rises above rare allergy to water — yes, water

Published: Sunday, April 5 2015 4:05 p.m. MDT

Springville High School student Alexandra Allen is one of 34 people in the world known to have the very rare and hardly understood condition, aquagenic urticaria, which causes her skin to break out in a swollen, itchy rash whenever it is exposed to water.

Tom Smart, Deseret News

MAPLETON — A potentially relaxing dip in the family's new hot tub turned treacherous for Alexandra Allen, leading to a very rare diagnosis that has changed her life.

"I swelled up in hives everywhere," she said.

Doctors feared the then-12-year-old experienced a reaction to hard water, or perhaps to the potent chemicals present in the tub.

But it's even more obscure than that, earning the teenager the ridiculous moniker of "water demon."

Allen is allergic to water, or H2O intolerant, which she agrees "sounds absurd."

Subsequent reactions have been more severe, including a trip to Flaming Gorge that landed her in the hospital with internal bleeding and painful joints, and unable to breathe. She's learned to avoid coming into contact with water as much as possible.

"It's not worth it anymore," Allen said. "It's both emotionally strenuous and physically painful. I can't let myself go there."

An active teenager, the 17-year-old has reformed her diet and exercises only in cooler temperatures to keep her body from producing too much oil, sweat and odor, allowing her the privilege of showering about three times a week. Even still, the showers have to be quick and cold, providing mere minutes for the essentials of a quick wash and rinse.

The skin on her hands and feet are less sensitive, but can produce adverse reactions when they get too wet too often. Sweating during sleep, though she doesn't sweat much to begin with, can also be a nuisance, Allen said.

And symptoms can last anywhere from three hours to seven days after exposure.

"It feels like your skin has been sandpapered down until there's only one layer left and it itches, but you can't itch it or it will break and burn and bleed," she said. "You just feel like you've been dipped in a vat of acid, not for long, but for long enough to tear off a layer of skin."

The disease, formally called aquagenic urticaria, is so rare that only about three dozen cases are known in the world, with more probably undiagnosed. It supposedly gets worse as a person ages, but doctors don't know much about it and many physicians don't even acknowledge it exists.

"Every doctor I see about it is surprised and looks at me like I'm crazy," she said, adding that the unique symptoms she experiences — different from other histamine-releasing allergic reactions that often cause respiratory symptoms, too — prove her disease.

Tests to confirm the disease, which include soaking in a tub of water and other forms of exposure, she said, "was similar to torture." Like most urticarias, symptoms must be produced to confirm the diagnosis.

But Allen, a Springville High student who also has severe dyslexia and attention deficit disorder, doesn't want her allergy to water — or any of her ailments — to define her. Few people even know about it.

"I think I'm lucky, compared to a lot of other diseases I could have had," she said. "At least this is tolerable and manageable."

She's developed tricks to cope with each condition, and has excelled in school and at other hobbies and interests she's worked at through the years, including writing an eloquent blog (alexandrallen.com), learning to play multiple musical instruments, reading a variety of texts and authors, playing rugged rugby, and rock climbing.

She finds opportunities to serve others, and has worked with humanitarian organizations in other countries. She's heading to India with her mother this summer.

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