She’s in unchartered waters.
An Arizona teen is so allergic to water she can’t even cry or shower due to the pain it causes her skin — and she can’t drink it without becoming violently ill.
Abigail Beck has aquagenic urticaria, a rare condition — with only around 100 cases on record — that causes itchy hives upon contact with water. The 15-year-old was diagnosed in April after informing doctors that her tears felt like acid and showering caused her to erupt in hives.
Every time she drinks water, she vomits.
“I cry like a normal person, and it hurts,” she told Kennedy News, describing her tears as “one of the worst parts” because they burn her face. “It runs my life, but I don’t want it to. I throw up if I drink water, my chest hurts really bad and my heart starts beating really fast.”
Due to her extreme allergy, Abigail hasn’t drank a glass of water in a year and instead takes rehydration tablets and consumes energy drinks and pure pomegranate juice.
“I never have the urge to drink water at all,” Jones said. “I don’t want to drink it, the taste is bad for me.”
Doctors are now considering an IV line for her to give her more fluids as a more “permanent treatment,” she said.
“I had to educate my doctors about my condition because they’ve never had to experience it before.”
Abigail Beck
“I’m scared that if it gets out of control one day, no one will know what to do including myself. I don’t even know how to help myself. I try to keep in good spirits, and I know that if something did happen, then the people around me will do the best they can.”
Her condition keeps her from being active — sweat hurts and could lead to dehydration — and even going outside in the rain.
“If it’s raining, I probably wouldn’t go out, but if I have to, then I make sure I’m fully covered with a jacket and three pairs of sweatpants,” she said. Luckily for her, there isn’t much rain in Tucson, Arizona.
Meanwhile, she’s forced to painstakingly read every label on foods and drinks — but struggles because water is in “everything.”
“I have to check labels, but everything in this world has water in it. The last time I drank water was a year ago,” she said. “I can drink things without a lot of water in them like energy drinks and pure pomegranate juice.”
Despite the extra precautions, she still slips up.
“I had a reaction a few days ago because I drank a sports drink that I didn’t realize had a lot of water in it,” she said. “I had a reaction for about four hours where my stomach was cramping, my chest was hurting and I was very light-headed and tired.”
But the scariest part of the rare condition is the lack of medical information about it, since it’s so uncommon.
“I don’t know if it could kill me, I haven’t been told,” she said. “I have symptoms that could make my heart stop, but nobody knows anything about the condition, so they don’t know if my heart or lungs could stop working.”
While she doesn’t yet have an EpiPen (the auto-injectable device that delivers the drug epinephrine), she’s working with an allergist to devise a plan for potential allergic reactions when she’s at school.
“She handles it really well. I, of course, hate to see my daughter in pain. I often wish I could take the pain for her. I feel hopeless. Like I want to cure it right now, but can’t,” said Abigail’s dad Michael Beck, who works as a high school assistant principal. “I worry, but not completely. I do not think her allergy is so bad that water can kill her, of course, but I worry about her overall health, and we are looking at different things that can hydrate her to keep her healthy.”
Abigail first started experiencing symptoms when she first hit puberty three years ago, but “it took a long time to get diagnosed,” she said. “It slowly progressed and started getting worse over time. When it rained, it hurt really badly, it felt like acid.”
At first, Abigail thought it was normal – that “everyone felt pain from water” – and even asked her mother if she felt that way, too.
“I asked my mom recently if she remembers me asking that, and why didn’t she think anything was wrong,” she said. “She said she just thought it was something a kid would say.”
Her father, however, knew something was wrong when Abigail broke out in hives after showering.
“I had never heard of aquagenic urticaria before this,” Michael, 53, said. “Honestly, I thought you could not be allergic to water since the body is made mostly of water.”
At first, Abigail thought something was wrong with the water, or that she was wearing lotions that didn’t mix well with it. But as she got older, showering and swimming grew to be more difficult.
“When I shower, it starts off pretty mild, then I get a rash and red welts, then it develops into hives,” she said. “When I get out, the reaction really starts to happen. I have to dry off as quickly as possible. I have to let the water run and get out of the water while I shampoo my hair.”
Now, she showers once every two days and takes antihistamines and steroids to combat any reaction she has to water.
“I’m a very clean person, and I try to stay clean without having to shower,” she said.
After taking a “long time” to find a doctor to help her because she “didn’t want to seem crazy,” she’s now speaking out about her rare condition in the hopes it will help others who are suffering and cultivate more empathy.
“It gets really frustrating. People ask me to explain how it works and I can, but I can’t explain why it happens because nobody knows or understands it,” she said. “I had to educate my doctors about my condition because they’ve never had to experience it before.”
She even educated her own parents, telling her father her own diagnosis after researching her symptoms online.
“I wasn’t really surprised when she was diagnosed. Abbey is really smart and uses her resources very well. She started reading articles on water allergies and what was going on,” Michael said. “She told me what she had. I took her to my doctor, and she prescribed an antihistamine to try, which helps, but not completely.”
Abigail hopes that with more general education about her condition and others like it, people will be more understanding.
“When I tell people that I’m allergic to water, people think it’s absolutely ridiculous and a lot of people are shocked by it. People always point out that our bodies are made up of water,” she said. “Some people ask questions which I’m fine with because I’d like to help educate someone, so I’m open to answering questions.”
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