By Kristen Chandler
Living with food allergies, or being the parent of a child with food allergies, is not easy—food allergies affect our lives on a daily basis. People with food allergies don’t have the luxury of going out to dinner on a whim, or grabbing a snack while at a friend’s house. But imagine that your allergies affect your daily life not only as far as what, where or how you eat, but in other areas as well. What if you broke out in hives whenever you took a shower or got caught in the rain?
This is the case for Alexandra Allen, a Utah teenager who suffers from a rare allergic disease called aquagenic urticaria (AU). This disease is so rare in fact that there are fewer than 100 cases recorded in scientific publications. This is a form of urticaria, meaning that the reaction occurs only when contact with the allergen is made with skin. Those affected by AU can drink water but can experience severe reactions when they encounter any form of water externally, including tap water, fresh water, rain water and even tears. Symptoms include hives that itch, burn and bleed. The disease is seen most often in females and occurs around the time of puberty, although there have been cases of adult onset AU.
When Alexandra was 12 years old, she broke out in hives after going swimming. Until that day, she had never been bothered by water. So, her family suspected that the chemicals in the pool water were to blame and gave Alexandra antihistamines. She took a shower to rid her body of the chlorine. Unfortunately, though, when she woke up the next day, Alexandra’s reaction had become worsened. Over the following year, she continued to react to pool water, with reactions ranging from mild itchy spots to severe, painful hives lasting for several days. She also began to have reactions to other types of water.
Two years after the first reaction, Alexandra and her family were on vacation and took a swim in a lake. Lakes contain fresh water, and this lake was known for being very clean. However, Alexandra experienced her worst reaction yet (welts and aching all over, difficulty breathing) after swimming in the lake, and she and her family then realized it was time to get some answers. After two more years of having more regular reactions, like when she washed her hands or when it rained, and seeing various doctors and dermatologists, Alexandra was finally diagnosed with AU.
Alexandra’s brother had read an article about AU, and she and her family realized that the symptoms described exactly what she had experienced. She went to a dermatologist with her findings, and the doctor considered her symptoms and history and agreed on a diagnosis of AU. Alexandra’s family did want a second opinion, so she endured experimental testing that she described as “torture” and, finally, four years after that first reaction, it was confirmed that she was allergic to water.
Once Alexandra received her diagnosis, she began to manage her disease the best that she could. Now 17, she takes a daily antihistamine and uses medicated creams as needed. She also carries epinephrine since the reactions have at times been severe enough to cause her throat to swell. But as with food allergies, the primary form of treatment is avoidance. As you can imagine, completely avoiding water is almost impossible.
Alexandra limited her showers to two very short, cold showers each week, and she carries hand sanitizer to keep washing her hands to a minimum. She cut her hair short and stopped using water-based makeup, lotion and perfumes. She converted to a vegetarian lifestyle so her body would put out more natural oils and would stay clean longer, and she drinks through a straw to ensure that she doesn’t spill any water on herself. Alexandra is unable to travel to tropical climates because the humidity makes it dangerous for her.
Being allergic to water makes Alexandra’s life difficult, to say the least, but she continues to thrive despite the challenges. She may not be able to go to pool parties, play in the rain or snow, or take long hot baths, but Alexandra enjoys music, writing and air hockey. As she puts it: “Allergies are a footnote in our biographies, not entire chapters of it.”