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.
The third of four children in the Utah-bred family and the only girl, Allen recalls a very formative and adventurous childhood. Various books were always available throughout the house, and there was also freedom to roam and experience the miles of land between the neighbors in her town.
Her parents have been supportive of her bounteous ambition, helpful in figuring out ways to get around the setbacks that are inevitable with a condition that precludes contact with a substance that makes up the majority of the human body, forms the earth and falls from the skies.
"We all joke about it, I'm just a freak of nature," Allen said.
She savored swimming and bathing without pain up to age 12, and she doesn't expect her family and friends to limit trips to the beach, lake or pool. They vacationed in Hawaii recently and Allen recalls sitting on the beach just enjoying the scenery.
"There was a moment I remember whining to myself about missing out, wallowing in self-pity. But you have to get over that," she said. "As far as I can tell, it's just a large inconvenience. It's a small aspect of my life that I have to tiptoe around."
Allen holds on to an almost impossible dream, admitting that it might be the irony that attracts her to it, but she plans to live on a sail boat some day — at least until the surrounding water gets the best of her.
The estimated progression of the disease, she said, "doesn't make me particularly excited for the future." But the teen vows she's not going to hold herself back with something over which she has no control.
She sometimes cheats and has a lukewarm shower instead of bearing the cold, since lower temperatures don't elicit as severe a reaction as warmer ones. But any whole-body submersion produces the painful bumps.
Doctors warn her that her throat may someday swell in reaction to drinking water, but she laps it up while she can and hopes that won't be an issue for her in the future.
Allen has reached out to another aquagenic urticaria patient in England, who told her life isn't all that unbearable. The two joked that the disease can at least "get you out of doing the dishes."
"At least we're not allergic to cats. We can still have a cat," Allen said. "I would say that it is not that bad. We are lucky. I look at it that I'm less of a freak show and more with a perspective that it is an adventure."
"You do feel special, not in a good way, but you do feel special."
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