A 17-year-old high school senior has been diagnosed with an allergy to water, a disease so rare that approximately 50 cases have been described in all of medical literature, according to Dr. Barney J. Kenet, a dermatologist at Cornell Medical Center.
Though a water allergy is not a true allergy, it produces severe reactions very similar to standard allergic reactions. “It’s a real thing. We learn about it in medical school, though I have never seen a case in my practice,” Kenet said.
Any watery substance, such as rain, sweat, tears, or snow can cause the reactions. The disease is known as aquagenic urticarial and is not well understood. According to Kenet, one theory is that a toxin is produced by the sweat glands and causes an immune response. Another is “that antigens that cause the immune system to produce antibodies are absorbed in the skin after dissolving in water to trigger the allergic reaction.”
Regardless of the cause, Alexandra Allen has had to find ways to avoid contact with water. Her dream job was to be a marine biologist on a sailboat, but after her startling diagnosis, she realized this is unlikely to happen.
Allen’s first reaction to water was at the age of 12. She swam in a hotel pool while on vacation with her family and woke up that night scratching hives. “I remember sitting in the bathroom trying so hard not to scratch myself and make it worse until my mom came back with the Benedryl,” she said.
At first the family assumed it was a reaction to a chemical in the pool, but Allen had a similar reaction after swimming in a lake known for very pure water.
At 15, Allen stumbled across her own diagnosis while reading a medical website. The site mentioned aquagenic urticarial, which is noted for painful reactions to skin contact with water, as well as dry skin and eyes after water contact. Allen told her dermatologist about her findings, and he confirmed them.
“He brought in a few other doctors and they just sat around in awe,” she said. The test she underwent to confirm the diagnosis, sitting in a tub of water, was “like being tortured.”
She described how the reactions feel. “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,” Allen 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.”
Allen has made lifestyle changes to reduce her contact with water, including no swimming, no humid climates, and only two to three cold showers a week. She also became a vegetarian in hopes of reducing skin oils.
Unfortunately, Allen’s condition is thought to be degenerative. She spoke to a British lady with the same diagnosis who must consume Diet Coke, as she can no longer drink water.
Allen has spoken out about living with the condition. “I would like to say that I am not the only one with this illness, and there are [a] great deal of other illnesses like it,” she said. “I am willing to speak out about it and let my story become one of these news-cycle fads because I know that somewhere there is a fourteen-year-old girl who can’t go swimming with her friends when they invite her. And I know that she feels freakish.”
In lieu of water activities, Allen finds plenty to do on land, including writing her own blog.
The upside of the disease, according to Allen? “At least I’m not allergic to dogs — and it does get me out of doing the dishes,” she said.