You can drink the water, but don’t let it get on your skin. For people with aquagenic urticaria, a rainy day or summer pool party can turn into life-disrupting allergy triggers. However, with only 50 or so documented cases worldwide, the condition is extremely rare.
Two years ago, Laura McDaniel’s preteen daughter started exiting the shower with her upper body dotted with what looked like welts with hives in the middle. “Rylie would say she was very itchy, almost like burning,” her mother recalls. Switching to different types of soap and shampoo, including mild baby shampoo, didn’t help.
About a year prior to these symptoms, the family moved to a new home in New Oxford, Pennsylvania, with well water. What if their water supply was the problem? “So we actually took her to another place to shower,” McDaniel says. “To my mother’s house, which had regular city water, and she still had the same symptoms. I run a hotel in the town next to us. So we tried it there, because that was a different water source as well.”
However, Rylie’s symptoms continued. Their pediatrician referred them to allergy specialists, who after getting her medical history did a surprisingly low-tech test.
[See: 16 Ways Your Body Adjusts to a New Climate.]
“They took her arms and used wet paper towels with several different kinds of water on them,” McDaniel says. “Like one right out of the tap, a distilled water, one with saline, and laid those right on her arm then waited. And each [skin area] broke out. And that was when they figured it was from the water itself.”
Now, at 13, Rylie takes the antihistamine Zyrtec almost daily, McDaniel says. When she plays softball in hotter weather, she has to be more careful. About a year before the symptoms started, the family had installed a swimming pool. “She changes immediately when she comes out of the pool and has to be completely dried off,” her mother says.
Different seasons bring different challenges. While sled-riding and playing in the snow with her cousins last winter, Rylie developed a cough along with hives on her face. Humid days can also bring on a breakout.
McDaniel is concerned about effects on her daughter’s social life — when a friend invites her to the beach or a pool party and she declines. “As a teenager, when you start to break out on your face in hives, it’s hard to explain to other eighth-graders that ‘I have an allergy,'” McDaniel says. “Especially when you say you have an allergy to water. A lot of people kind of look at you like you’re crazy.”
Rylie is accustomed to giving people enough information so they can check out the condition on their cellphones. She uses her own cellphone to play a song while she’s in the shower — once the song’s over, it’s time to get out.
[See: 10 Seemingly Innocent Symptoms You Shouldn’t Ignore.]
Several years ago, a woman in her early 30s came to the University of Kansas Medical Center complaining of experiencing intense itching and small hives immediately after skin contact with water. This had gone on for two years, according to a case report published in the May-June 2016 issue of the Journal of Allergy and Clinical Immunology.
She’d previously tried a variety of treatments, including antihistamines. “Despite that, every time she was in contact with water, including every time she tried to bathe and shower, she would have pretty severe hives,” says study author Dr. Andrew Rorie, an allergist-immunologist now based at the University of Nebraska Medical Center, where he is an assistant professor of immunology.
Rorie and his colleagues diagnosed her with aquagenic urticaria. “Most allergists will go through their careers without ever seeing it,” he says.
In this patient’s case, they decided to try something different: a drug called Xolair. While the injectable medication, whose generic name is omalizumab, has been on the U.S. market since 2003 to treat asthma, it wasn’t approved by the Food and Drug Administration to treat chronic urticaria — the medical term for persistent hives — until March 2014.
The patient was hive-free after her first dose and has been so since, Rorie says: “One of the things she was most excited about — she was able to go swimming for the first time in a few years.”
What Aquagenic Urticaria Is and Isn’t
Patients with aquagenic urticaria often end up at academic medical centers to get a handle on their diagnosis, says Dr. Whitney High, an associate professor of dermatology and director of dermatopathology at the University of Colorado School of Medicine. First, he says, other much more likely causes must be ruled out.
Urticaria, in general, can have a variety of triggers, High explains. Food allergies, for instance to shrimp or bananas, can make people react with hives all over their bodies. Physical urticaria is a different form, usually caused by some kind of physical stimulus such as pressure or vibration. In aquagenic urticaria, the culprit is water applied to the skin.
“It could be salt water; it could be fresh water; it could be cold water,” High says. “It doesn’t really matter. It’s the same type of hives-like reaction.” The condition usually causes tiny red bumps, he says, especially around the hair follicles and areas where water has touched the skin.
When people get hives associated with sweating, it’s called “cholinergic urticaria,” which is a different diagnosis and much more common. “Cholinergic urticaria is caused by increased body temperature from whatever means,” he says. “It could be exercise; hot showers. If I put you under a heat lamp. It’s different from aquagenic urticaria, but it can be confused very easily.”
If people only develop itchiness — no hives — when water is placed on the skin, that’s the sign of yet another condition called “aquagenic pruritus.” (Pruritus is the medical term for itchiness.)
High strongly emphasizes that in most cases, people who suspect they might have aquagenic urticaria really don’t. “Go see a dermatologist or an allergist,” he advises. If testing reveals the condition, a treatment plan can be developed with medications and other approaches. Some doctors prescribe ultraviolet light treatment. For patients at risk of more severe reactions, carrying an EpiPen is a possible precaution.
[See: 8 Questions to Ask Your Pharmacist.]
“I see a lot of people who think they have aquagenic urticaria, but in fact they have something else much more common,” High says. “The odds of having plain old, common urticaria — that’s pretty high. Many, many people have hives on at least one occasion. Odds are when you have hives, that’s not going to be aquagenic urticaria.” Whatever the cause, he adds: “We don’t want anyone to suffer from hives — we always want to help them.”
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What It’s Like Being Allergic to Water originally appeared on usnews.com
