The following appeared in Allergic Living Magazine in the spring of 2015

 

was 12 years old years old and in midst of my Junior High identity crisis when one day, after swimming with my family, I broke out into welt-like hives. My parents and I assumed this was due to chemicals in the pool, so I took a shower to wash off the chlorine, downed some antihistamines and went to bed. The next morning I woke up with double the hives, and a problem much bigger than my pre-teen frustrations.

For the next year I continued to have random reactions to pool water; sometimes I would get painful hives that lasted for days and other times minor itchy spots would appear and disappear quickly. The reactions progressed in intensity and frequency, and soon I was getting hives from types of water beyond backyard pools and hot tubs.

About two years after the initial incident, I took a dip in a freshwater lake in Flaming Gorge, Utah, and my 14-year-old body reacted worse than ever before. I was covered in welts, my hands and feet swelled, I had trouble breathing, and I ached all over – which doctors later explained was because my joints had bled internally. In bed that night, saturated with creams and self-pity, I decided I needed a definitive answer to what was wrong with me.

The following two years were like a movie montage of doctors’ offices and driving past swimming pools. Reactions became more regular: when I washed my hands, when it rained, or even when the humidity was above average. I saw many dermatologists who were sympathetic but perplexed. Then, my little brother read an article about aquagenic urticaria – an incurable condition in which skin contact with water causes painful or itchy lesions. The condition, though rare, is seen more commonly in women and studies indicate symptoms often start in puberty.

The description fit my experience perfectly and even included issues that I had not previously considered to be related symptoms, such as my dry eyes or the more intense reactions to hot versus cold water. I took my theory to my dermatologists and told them of my hives. They considered my symptoms and history and agreed, giving me a clinical diagnosis of aquagenic urticaria, a disease that impacts around 50 officially diagnosed people in the world. My family and I wanted a second opinion so, a few months after my initial diagnosis, I sat in the University of Utah dermatology center with two dermatologists and five curious students. After answering the usual list of questions, a doctor took a rag and soaked it in warm water, then placed it on my arm and told me to hold it there. Not three minutes later I removed the cloth to reveal hives sprouting up. I was itchy, but relieved. Four years from my first outbreak, I had a diagnosis. I was allergic to water.

As people with allergies understand, once you know what you’re allergic to, life does become a little easier. I started to get monthly injections into my stomach of Xolair, the drug that’s also used to treat chronic hives and asthma, to make me less sensitive to water. Although Xolair did not prove useful for me after five months of injections, it did indicate other options that might be more useful to my doctors and I now take a daily antibiotic and always have a small collection of medicated creams handy for the outbreaks while me and my doctors brainstorm other treatment options. Since my throat swells when my skin is exposed to large amounts of water, I have also started carrying an epinephrine auto-injector, although I have yet to use it. However, the primary treatment for aquagenic urticaria is to limit my exposure, so I mostly just try and stay clear of water.

That statement seems unthinkable to most people. But avoiding water is what I do. For instance, I restrict my bathing to two cold, brief showers a week and became a vegetarian so my body would produce fewer oils and stay cleaner longer. I also chopped my hair short to limit the time I had to spend shampooing, and cut out water-based makeups, lotions, or perfumes – even some of the prescription creams intended to treat my symptoms caused reactions.

As this is an urticarial disease I can drink water without pain, it is only when the rest of my body is exposed that my throat will swell as if it is an allergic reaction. However, I do tend to drink from a straw just to be sure I won’t spill on myself or get water on my face. I have to be prepared for rain or snow with an umbrella and ultra-stylish rain poncho, and snowball fights are more hazardous than fun. I’ve learned to run only at night when it’s cool in order to keep sweating to a minimum, and I always carry hand sanitizer to wash my hands.

My condition makes traveling to humid places potentially dangerous – as soon as I step off the plane my skin feels will start to get irritated. Venturing to high-humidity destinations requires a constant regimen of heavy-duty steroids, as I learned the hard way while doing volunteer work in Cambodia last year. It seems another trip to Southeast Asia is off the map for me.

While I’ve mostly kept my condition to myself, it does lead to awkward conversations. I may be the only 18-year-old girl who has been asked repeatedly: “How do you shower?” When I’m caught with my hand sanitizer in the restroom, someone will always query, “Why not just use the sink?”

Or when I’ve been invited to the surprising number of high school activities involving water – like my senior party held at the local pool or telling people trying to start impromptu water-balloon fights I could not participate – I often have to make a tactical decision. Is it worth it to explain my allergy to a new batch of doubtful co-eds, or should I just make a casual excuse about being busy?

Earlier this year, I wrote about my experience with aquagenic urticaria for an essay contest, and my submission caught the attention of journalist who covered my story for the local newspaper in Utah. Within hours of the article appearing, I received calls from ABC News, a girl in my math class, People magazine online, and my cousin who was previously unaware of my condition. After the article was picked up by websites and blogs all over the world, I became a kind of unofficial spokesperson for the disease.

As odd as the attention has been, becoming an Internet trend did have an upside – I realized that I was not alone. There are hundreds of thousands of people dealing with urticarias, and although their conditions are not exactly like mine, they too know the feeling of wondering if you’re an alien with a strange form of kryptonite.

Living with aquagenic urticaria has taught me that there are things beyond our control. Life is not about the limitations we face. Just like your life is not defined by your inability to walk through walls, my identity does not hinge on the fact that I can’t do dishes.

When you’re allergic to the most common substance on Earth, you can’t look at the world through the lens of what might be untouchable or unachievable. I learned not only to take shorter showers but also that we are bigger than our problems. I am a musician, air-hockey champion, and writer, and I have ambitions twice the size of whatever obstacle is thrown my way. Allergies are a footnote in our biographies, not entire chapters of it.

November 25

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