Water Demon: A Wordy FAQ

So, you say you’re a water demon? Well, yeah, sure. In a way…but it is not my sinner’s status that makes me one, it is a disease called Aquagenic Urticaria.

This means that all those times my skin broke into hives and my joints bled into themselves were not because of the times I used Polly Pockets as sling-shot material as a child, but because I am in all actuality allergic to water. When someone is allergic to hay they are accustomed to breaking into hives when they come into contact with it, when someone is allergic to crabgrass, it is reasonable to assume that after laying in it for an hour they would find bumps and hives all over. My illness works the same. Only it’s when I touch the staple of all life on earth: Water. It’s an extremely rare illness that currently has about 50 documented cases in the world.

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Above is a reaction to my own sweat after a run.

The illness, which is actually classified as a disease not an allergy because of it’s complex genetic nature, is degenerative, meaning as I age my reactions will probably become more severe and I will be forced to remove myself more fully from light rain and the tears produced when I watch the beginning of Up.

My reactions to my skin coming in contact with water are varying in degree depending on the temperature of the water, the duration of my exposure to it, and how much I have sinned that week.

Now to address the elephant in the room:  How do I shower?

Trick question: I don’t!  But really I did go through a solid Jainist phase where I was convinced God didn’t want me to shower because I was housing some kind of sacred bacteria that I would learn to train and channel into curing the world of all affliction. That soon ended when my mother noted that my hair had indeed begun to house some life forms.

I then embarked on the Sunday shower period. This was more effective and worked for a while because I was the only girl in a family of four kids. But when Junior High came along, it became clear I needed more showers just for flirting sake. Thus the short, cold shower of hell was inaugurated. To this day I primarily deal with the act of showering with contempt, and about twice a week.

Are you allergic to your own sweat?

Yes. I am also a runner so this has proven problematic at times but luckily I don’t sweat much in the first place and when I do I have an excuse to stop and cool down (turns out in my case, showering off the sweat is a bad move).  I live in a low humidity climate, where sweat evaporates almost instantly.  If I lived in Georgia, this would be a bigger problem.

Couldn’t all this be in your head?

It’s possible that any disease has a psychological component.  However, given the fact that I react to water in my sleep, that doesn’t seem to be a significant factor here.  With all the urticaria diseases, it’s hard to see how serious, even life-threatening, reactions to sun or water or other triggers are psychosomatic.  It would seem more clear that dramatic dermatological reactions to stress, depression, or fear would have psychological origins.  What is really irritating is how people assume you are lying, or being overly dramatic, or are straight-up crazy when you describe your condition.  The disease is manageable, people’s reactions to it can be very painful

Am I allergic to my own tears?

I don’t know; I never cry. But, yes I do react to my tears.

Aren’t you reacting to things IN the water, rather than the water itself?  

That is, of course, what we assumed.  We first noticed the reaction when I was in swimming pools, so we assumed it was the chlorine in the water.  So I stopped getting into swimming pools.  Then we noticed the reaction with tap water in the bath tub.  Well, that water’s chlorinated, too.  So we went to the beach, thinking ocean water was as pure as we could get.  But my skin reacted to that, too.   Maybe the water was too cold.  Maybe it was too salty.  To this point we were still proceeding on the assumption that I was reacting to things in the water, because it never occurred to us that I was reacting to the water itself:  That would be crazy, we’re made of water!   The final straw was the experience in a freshwater lake described above.   We innocently thought this water had no significant chemicals, the temperature was warmish, there was nothing in it that could hurt me.   So I blissfully swam and played without giving it a thought, happy to be in the water again.   Then the reaction started and it was the worst, yet.   Even at this point we thought it might be the pH of the water or some other factor.   The issue was decided with a simple piece of cotton string.   We tied the cotton string around my wrist., not tight, but making contact with my skin.  I didn’t react to the cotton string.  Then we poured distilled water on the cotton string.  The string stayed wet and kept the water in contact with my skin.  In less than thirty minutes, there was red ring around my wrist that looked and felt like a burn. I had reacted to pure water, pH 7. We had not seen that coming.

If you fell overboard from your sailboat and got left behind, would you drown first or die from your reaction to the water?  

Morbid question.   I like it.  Assuming water conditions and temperature were favorable, I could tread water for quite a while.  (I CAN swim.)  Eventually, however, one way or the other,  I would drown.  Assuming I had a horrific reaction to the water, it would begin to reduce my ability to move and breathe fairly quickly.  I’m an otherwise healthy, active person, so let’s assume I could normally tread water for three hours.   But aquagenic urticaria would reduce my survival time in the water.  By how much is an interesting academic question, which can probably only be resolved with observational data.   I do not volunteer for this experiment.

If water can destroy you, doesn’t that make you a witch?

Have you been talking to my brothers?  They are convinced this is the case. Just because the Wicked Witch of the West had the worst case of aquagenic urticaria EVER, does not mean that everyone who has it is a witch.   If you throw a bucket of water on me, I will not melt.  I will be annoyed and run to dry off as quickly as possible and probably break out into a nasty burning rash.  However, logically, this also does not mean that I am not a witch.  The only safe way to totally avoid the possibility of flying monkeys getting involved is to not throw a bucket of water on me.  Understand?

Can you drink water?

Yes.  My mucous membranes don’t seem to care about water.  Only my “normal” skin seems to be affected.   Of course, if I couldn’t take water internally, I would be long dead.   That would be very bad.

Do you have a good dermatologist?

I have a great dermatologist.  He has patiently tried whatever seemed likely to help.  Sadly, Xolair did not seem to do it for me.  Barring a great flood, I have all the time in the world to figure this out.  I’ll keep trying things and re-trying things.   It just means I can’t go swimming, surfing, kayaking or white water rafting, I can’t shower like everyone else, and I have to be extra careful about getting caught in the rain.  Otherwise, it’s no big deal.

So, yes, I am allergic to the liquids my body produces, but, hey, at least I can have a dog. In the past few years this illness has come to dictate much of my daily life and I’m sure will continue to limit my ability to participate in average activities, however I have learned to deal efficiently with it and how to effectively avoid the only substance that both seeps from the ground and falls from the sky. Although it is a peculiar illness, it is not generally a life threatening one.  Mostly my eyes are dry, I use a lot of hand sanitizer and I’ve never been scuba diving. Friends have frequently offered to pursue research into creating a suit that would allow me to swim completely untouched by water, I think I speak for all 50 of us in the world diagnosed with this illness when I say, cancer research really takes precedence over this one champ, cancer research. And about a thousand other diseases that are killing people every day. I am not, to my knowledge, a demon nor possessed by one, however I have never tried exorcism as a form of treatment, I’ll give that one a whirl next.

3 comments Add yours
  1. I’m sure you have already had numerous comments wishing you all the best and I’m just going to be part of the many people that feel for your situation. I’m not very good with words, so I will keep it short and simple.

    Please don’t give up that positive attitude of yours, there are many things that you have yet to try and experience even though you may be allergic to water. Although it may seem that everything has been closed off, I think you already know this but there will always be a path for you to take.

  2. I am also allergic to water. But I no longer struggle with it. I will explain how. I am 62 and have had this since my early teens. After years of battling with this and trying to figure out what it was I found a Dr. at UCSD Medical Center who had been to England to study it and had written a paper on it. For me this was intermittent. Sometime the water would make me absolutely crazy and other times it was not so bad. He explained that it had to do with the pigmentation of my skin and having a little color on my skin might stop it which is why it never affected my face. I was a nut for sailing and going to the river to waterski. The first trip of the summer was horrible. But them it wouldn’t be so bad for a while. I did not put it together until after this Dr. Once. the winter came and my skin tuned white again the itching would make me crazy again. I began going to the tanning salon. Now as long as I continue to keep color on my skin the itching does not bother me. Once it starts up, I head back for a tan and I get relief right away after 2 or 3 tans. Yours looks worse than mine. I almost never welted but just itched uncontrollably for about an hour or so after a bath, shower, pool etc. My Dr. called it Aquagenic Pruritis. Every Dr. always wanted to put me on medication like anti histamine etc but this never worked. The sun does the trick and today I surf, swim, waterski and bath without any trouble. I hope this helps you
    Mary

  3. Hi allen. I’ve seen the news one year ago that an utah teen have been diagnose water allergy. and nowdays I found your blog. okay you may be allergic to water. but allen. you have great talent . make some word and become many post on your blog. please keep try another and you will gain other experience. some people says that experience is the best teacher. but I’m sure that you will became great writer. I can feel your situation but please dont give up allen 🙂

    I’m sorry if some word are wrong. I’m not to fluent in make some word. but you’re great allen. thankyou

    Simon dandy
    indonesia

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