(Photo-Illustration: Photos: Corbis)
By Alexa Tsoulis-Reay
In 1963, a 15-year-old girl presented herself to a pair of dermatologists in Pennsylvania complaining that she’d broken out in angry, red lesions after a session of waterskiing. That first mysterious outbreak became a trend: Blotchy, itchy hives would pop up all over her limbs every time she took a bath, went swimming, or perspired heavily. The doctors conducted a series of tests to rule out obvious possible triggers like cold and, using a hand towel soaked in distilled water, identified a condition called aquagenic urticaria: Sufferers are so sensitive to pure water it causes them to erupt in hives within minutes of exposure. The doctors were perplexed, noting in their report that “water is the most trusted compound in the universe … we bathe in it, we drink it, we live by it, asking of it only purity. Hence it is with difficulty that one comes to realize that some individuals react adversely to simple contact with water.”
The condition remains as rare as it is mysterious. Douglas L. Powell, clinical professor in dermatology at the University of Utah Hospital, is their unofficial “hive expert.” He’s seen only two cases of aquagenic urticaria in the last 15 years and notes that there are fewer than 100 cases reported in the medical literature. Given the minuscule sample size, few trends have been identified. We do know that it appears to be more common in women and is likely to commence during puberty. Some believe that it’s really a hypersensitivity to trace chemicals in water, but, as Dr. Powell argues, the current test used to diagnose the condition exposes patients to water that’s totally chemical-free, and sufferers still break out in hives. There are treatments that can reduce a sufferer’s sensitivity, but there is no cure other than avoiding water.
Alexandra Allen, an 18-year-old college student from Utah who suffers from aquagenic urticaria, spoke with us about her condition.
When did you start reacting to water?
I was 12 when it happened the first time, and that’s not surprising because it often kicks in during puberty. We were on vacation in California and I had been in a swimming pool. I woke in the middle of the night covered in hives. Mom rushed to Walgreens and got me Benadryl. It helped the itching a little bit. But when the itching first started I’d taken a bath and a shower because I thought I must have been allergic to the chemicals in the pool. We didn’t know it at the time, but the water just made it worse.
What’s the reaction and physical discomfort like?
I describe it as like the top layer of your skin getting sandpapered off — you feel very raw. And there’s an incessant, burning itch. If I’m not taking anything whatsoever I will have hives every day. On average I have hives every other day, depending on what I am doing. If it’s really hot out and I am walking around all day I will probably end up pretty well covered in hives by the evening because my skin will react to the sweat and the dampness of my clothing.
My skin is pretty much constantly red, blotchy, and so itchy. It might not get to the point where it’s hived, but it will be at the beginning stages and then go down or flare up. It’s a mess. I try so hard not to be awkward, and sometimes I’ll be in a social situation in pain and itching, but I care more about how the hives look, so I focus on trying to cover them up. A teenager doesn’t want to have to keep explaining to people, “Sorry, I have a rare medical condition that makes me look like a freak.” But if I’m sitting in class or something I would much rather it looks bad than feels bad because when it’s itchy and burning I just can’t concentrate.
So what exactly is it that you are allergic to? Is it all types of water … ?
Technically, it’s a skin disease, not an allergy. Everyone produces oils that soften their skin, but the oils I produce become toxic when they meet water — and that’s the part that’s a mystery to doctors. They don’t know how or why the oil in my skin is different, if it’s genetic or if it was brought on by something in my childhood. They have taken skin samples and tested the oil. So far I seem to be completely normal — aside from the fact that I turn water into acid.
Can you bathe?
I do a lot of weird things to stay clean. I cut out meat and dairy so I can get away without showering for longer. In general, the longer I’m exposed to the water the worse the reaction, and the hotter the water the worse the reaction. So I take one cold two-minute shower each week. That’s it. I move as quickly as I can and then get out of there. I clean my hands with hand sanitizer — when I’m in a public restroom people think I’m crazy, and that’s probably when I get asked about it the most. It’s pretty obvious when you are avoiding touching water in a bathroom!
Do you ever wash your hands with water?
I probably do once a day just for a minute or two in cold water, which is unlikely to cause a reaction. The parts of my body that are exposed to sun are less likely to react. I clean my face with a cleansing wipe, which I also use on my underarms. I just pretend I’m permanently on a camping trip.
What about your hair?
I used to have really long hair, but I cut it all off about a year ago. When I had wet hair I would get hives all over my back. I’ll keep it short for the rest of my life. I mostly wear it down, but when it gets to a certain point I hide it with beanies. Also, I’m allergic to almost all makeup and skin-care products because of the water content. There are a couple of Vaseline-based lotions I can get away with, and I can use powder makeup.
I guess you can’t really get dirty, right? What happens when you do? I’m thinking about street vomit, or that dirty guy on the bus who sweats on you …
I have to avoid getting too dirty because if I were to scrub myself it would make the hives really bad. If I stand on someone’s throw-up I just have to clean my shoes and try and forget about it. I really couldn’t be someone with a germ phobia or obsessive cleaning disorder. That just wouldn’t work.
What about rain?
It doesn’t rain much where I live, but I do have to worry about being caught in wet weather. Recently I was stuck in the middle of a really bad storm, and I had to go home from school because I was covered in hives. But if it’s just a drizzle I’m usually fine. If it’s severe, like a torrential downpour, or if it gets my clothing all wet and it stays on me, the water on my clothing will cause hives.
I was recently in Cambodia and the humidity there was so intense, I was allergic to the air. It wasn’t a very fun couple of weeks. I had constant hives — I was so itchy.
Does it affect your travel?
My father is a motivational speaker who goes around the world training teachers and police officers how to deal with at-risk youth, and I often go with him. I went to India this summer; I was able to control it a little better than when I was in Cambodia because I was on medication the whole time, but I still had hives. When I was in Scotland a couple of years ago it was constantly raining — I was on guard the whole time. I carried six umbrellas — I made a turtle shell out of them to protect myself. I definitely see myself relocating one day. I like Utah, but I think I’m more of an East Coast personality. At one point I really wanted to live in Seattle, then I realized how bad an idea that was. People have told me that I’m a Portland type, so I thought I’d fit in over there. But it’s out of the question.
As I get older it could be a problem where I just can’t go to certain places. It’s a degenerative condition, so it will get worse as I age.
What about sweat?
I am allergic to sweat, so I run at nights, when it’s cold. The colder it is the less likely I am to react. I don’t react as quickly or as intensely to my own sweat, but I have had one or two reactions. I don’t know how much worse that will get as I get older. I can’t play sports I really love, like basketball, because it makes me too sweaty.
But you can drink water, right?
The doctors say it shouldn’t impact me at all, but I have talked to a woman in England who lives on Diet Coke because water has totally destroyed her throat. Technically, your esophagus has the same sort of glands as your skin, so it is possible that you could have that reaction — maybe that’s what’s happening to my voice right now. I’ve had laryngitis and I have been drinking a lot of water, so I sound scratchy.
How do you keep hydrated? What happens when you’re sick?
I’m constantly dehydrated because I don’t want to drink too much water and cause problems. People ask me if drinking Gatorade would be better, but it has lots of water in it. When I’m dehydrated I just have to choose which pain I want to be in more.
What happens when you cry? Are you allergic to your own tears?
I don’t cry very much, but I did have one extreme reaction to my tears, at the beginning of the movie Up. That was one of the last times I cried. There’s a scene at the start where an old man’s wife dies, and I just thought it was so sad. I was 15, at the movies with a bunch of friends, and I started bawling. It was embarrassing enough that I was crying at a Disney movie, but then to have my eyes swell up to the point that I couldn’t see out of them … I didn’t finish the movie, and I didn’t ever cry again. I just stopped. I’m either traumatized from crying or my tear ducts shut off when they realized it was a bad idea.
Before the reactions kicked in, did you enjoy the water? Had you gone swimming?
My mom says I’ve been in the ocean, but I don’t remember. I recall taking a swimming lesson in my neighbors’ pool. I was the rambunctious kid who was always jumping in too deep before realizing I couldn’t swim. I remember going to a water park with my cousins. They bet me $10 that I wouldn’t jump off the highest diving board, so of course I did it and got the money.
Some days I preferred to stay covered in dirt, but I do remember enjoying hour-long bubble baths. I’d soak in the tub playing with the foam building castles.
What about other kinds of water?
I grew up in Hobble Creek Canyon, which is very beautiful and rural — our house was 20 miles from the nearest neighbor. We lived on a huge plot of land, and I was a tomboy who played in the woods all the time. I loved to climb trees, and I made tree houses with twigs. It was a Calvin and Hobbes childhood — my brothers and I were always doing silly things like trying to make parachutes with bed sheets or climbing up on the roof. Then when I was about 10 we moved to the suburbs. My parents had adopted their first child — my oldest brother — because they thought they couldn’t have kids. Later they had four biological kids, adopted four other boys, and started fostering. Our home was diverse and multicultured, but I was the only girl.
We were about 30 minutes from Utah Lake. Our neighbors had boats, so we often went fishing with them. There was a pond right near our house, but I wouldn’t swim in it — probably because I was afraid of lake monsters. I really wanted to find a giant squid; I was obsessed. I found them fascinating. When I was 9 I told my mom I was going to live in a submarine and find that squid. Among my many career dreams I longed to be a marine biologist.
Wow, you actually wanted to work at sea?
I also dreamed of being a National Geographic photographer. It was upsetting when I realized that’s not only impossible because it’s an elite job that’s hard to get, but it’s also impossible because you have to travel all over the world getting messy. I can’t do that. I also wanted to join the Navy. I was really attracted to water-based jobs.
When did you realize that wasn’t going to be possible?
Shortly after our trip to California, my dad bought a hot tub. The first time I used it I had a bad reaction. So there was a period of six months where we were trying to figure out exactly what was causing it. We did tests where I was exposed to different chemicals. We changed the water in the hot tub to see if there was some chemical we were adding that I was allergic to, but I continued to have reactions, and they just got worse and worse.
So you were convinced that it was chemicals, or was it more of a mystery?
At first we were sure it must be chlorine, but as time went on it became more mysterious and irritating. And every time I’d shower to get the chemicals off my skin, it got even worse. I don’t know why it took me so long to learn my lesson.
But why would you ever think you could be allergic to water?
Right! I had never heard of such a thing. I just told people I was allergic to chemicals. And at that time my reactions were still rather random. As I got older they became consistent.
How’d you finally figure out what was wrong?
I went camping in Flaming Gorge. In Utah we have a lot of dirty lakes, but this one is known to be very clean, so I didn’t think there’d be any chemicals in that water. I swam all day long — I was so excited to be splashing around in the water. That night I was covered in hives. It was to the point where you couldn’t even tell where the hives began and my body ended. I was a walking hive.
We had to rush to the hospital. My esophagus was closing. My joints started bleeding, and my body went into anaphylactic shock. By the time I got to the ER I was having trouble breathing. I was a giant hive, and my joints were black and blue.
That must have been terrifying. Were you scared of what it was and how serious it could be?
I really was, but luckily my family is the stoic type. On the way to the hospital everyone was making jokes, teasing me, calling me a sissy, but that I’m tough and I’ll live. And I was the only girl, of course. I was sitting in the back trying to go along with it, but I was like, Okay, yes, I am a baby, but I am also having a very bad time over here! The doctors assumed I’d had an allergic reaction to something in the water, probably chemicals. They gave me a bunch of antihistamines and sent me home. That night my hands and feet swelled so much I felt like I was going to pop. We still don’t know if that was a water thing or just a reaction to all the antihistamines. But it didn’t go away. Now we know that the antihistamines can’t treat it because it’s a disease, not an allergy: I am not having a histamine reaction when I get the hives. They just treat the itch and offer some relief.
Did that make you anxious? Were you constantly worried about having a reaction?
By that point I thought I could be allergic to water, and of course my family thought I was completely crazy: “You can’t be allergic to water.” I honestly don’t think I really believed it, though. There was just no other explanation. Nothing made sense.
Then one day I was on the internet and I found an article with a name like “The World’s Top Ten Weirdest Diseases.” As I read about the signs and symptoms of aquagenic urticaria I found that it described me perfectly. I was like, Oh shoot! That’s probably it. I didn’t want to do the whole “WebMD diagnose yourself” kind of thing, so I went to my doctor and showed him the article. He couldn’t believe it either.
Had they even heard of it?
No doctor had ever mentioned it. When I gave my dermatologist the article he trailed off and left the room. He returned with another dermatologist, and they both questioned me. That’s when I was diagnosed. At first it wasn’t really a formal test or diagnosis; they considered my history of signs and symptoms. Like, for example, my eyes are always very dry because my body just doesn’t produce enough water. But they eventually did a test where they soaked a rag in water and put it on my arm. They removed it, and 20 minutes later I was covered in hives.
What did you think when you finally found out what was wrong?
When you find out that you are allergic to water, that’s an internal crisis beyond anything else. I felt like an alien. I was plagued by existential questions: Am I a freak of nature? Why me? Am I from another planet? No, really, what happened? Was I in a government test when I was a child and nobody told me? What does it mean that I am allergic to something as vital and common as water? Am I allergic to the world? It was emotionally draining trying to find a way to explain it to myself. At night I’d have nightmares that I was drowning in water.
And I was in denial. I kept looking around to find what I actually thought I was allergic to. I never stopped researching other ideas and options, and I didn’t really believe it just because I didn’t want to have to say, “Hey, I’m allergic to water.” I thought everyone else was crazy. After a while I accepted it. I realized I just had to learn how to cope with it; there’s no point getting caught up in what this means about me as a person. It’s just something I have to deal with. I’m not a freak of nature, I’m just a little bit … freaky.
How did your family react to the diagnosis?
I think my mom felt a bit guilty. I was a 14-year-old girl in the middle of a hot Utah summer where everyone is having water-balloon fights and running through sprinklers. She felt sad for me when my friends asked me to play with them and she heard me make up excuses because I didn’t want to say I was allergic to water. But mostly my family turned it into a joke. They laughed that I must be the Wicked Witch of the West. It was more family-dinner comedy material than family tragedy. One of the first things I said when I was diagnosed was “Well, at least I can have a cat!” “I could be allergic to cats, and that would suck.” You have to admit, being allergic to water is pretty funny.
How does it impact your self-esteem? Are your outbreaks ever so unsightly that you don’t want to leave the house?
I was in the midst of adolescence when this began, so I didn’t know how to manage it. I walked out of school a couple of times because I was so embarrassed by the hives. That was really hard because I was already a weird kid — I didn’t need anything to push me any further into strangeness.
In what way were you weird?
I’m dyslexic, and I have ADHD, so I was in special-education classes until I was 13. When I tested into a “normal” class, everyone assumed I was stupid, and I got picked on because I was this awkward tomboy fresh from special ed who didn’t know girls were supposed to be getting “cute” at that age. At one point they thought I was autistic because I refused to make eye contact — but I think I was just really shy. I spent the first part of my life in an isolated rural town, after all. When I went into a normal class I’d only just learned how to write properly; I had been etching the letters upside down my whole life.
Did you have friends?
I had three or four who were just as awkward as me. We wore oversized jackets, and we were obsessed with aliens. You’d find us in the field Skyping witches. As I Lay Dying was my favorite book. People didn’t really know how to deal with me; they didn’t know if I was stupid or very smart. I was raised by nerds. We didn’t have a TV until I was 11. We just watched Star Trek.
I had blue hair and black clothes. My favorite bands were Led Zeppelin and Bikini Kill, and I had a bunch of opinions on punk. In junior high nobody has opinions on anything, and Utah is ultra conservative. I came from a liberal house, so my thoughts stood out. I was a debate nerd. I played the bassoon. I played saxophone. I was in the jazz band. I played rugby. Your classic nerd.
How has it been since you started college?
I live off campus with a bunch of friends because I want to stay close to home while I am having treatments. I hope to transfer to the East Coast one day. My reactions have been worse the last year or so, and I did wonder if it was related to the stress of starting school or if it’s because I keep ending up in situations where I’m exposed to water.
I was recently at this party where somebody had water balloons and squirt guns, and it was this hilarious moment where everyone around me had this look of terror realizing that they had to protect me from water. I feel like that’s a quintessential moment in my life — I need an entourage to protect me from squirt guns.
Once, at a barbecue with a group of friends, someone got up on the roof and threw a bucket of water at me as a prank. It was the most awkward situation. Anyone else would be like, “Oh shoot, I’m wet!” But it was pretty bad for me. They thought I was just overreacting — I mean, it’s literally only water — but I started swelling and then I had to use an EpiPen. I have three EpiPens, so I always have one with me just in case.
Do you feel like the hives have held you back at all when it comes to dating or making friends?
I try not to let it get me down, but of course it bothers me. I carry a jacket with me no matter what the weather to cover hives that pop up on my arms. When it comes to dates it’s an especially awkward conversation. I still haven’t figured out when to mention it. Other medical conditions you probably wouldn’t mention until the third of fourth date, but this is something you should probably be up front about, right? “Yo! If it starts pouring rain or if we fall in a river, just know that I am going to turn into a zombie-witch-looking thing.” So I usually tell them on the first date. It’s hard to find a segue into that conversation; with other illnesses it can come up organically, like, “I can’t get pasta because I have a gluten allergy.” I can’t exactly say, “Oh, we are going out for dinner? Please don’t spill water or accidentally spit on me.”