As unbelievable as it sounds, I’m allergic to water.
It started when I was a kid and I used to feel a burning sensation on my neck after bathing. Most nights I’d jump out after a minute or so. But as a true tomboy, this wasn’t long enough to get the mud off. ‘You haven’t washed properly. Get back in,’ my mum Kayleen would say. Instead of going back in, I’d run the shower so she thought I was washing, then scrub my arms in the sink instead.
Although I loved sport, the same burning sensation would spread across my body as soon as I started to sweat. Being young, I didn’t question what caused it.
Over the years my rashes mainly stayed under control and I lived a normal life. But then I moved from Victoria to Alice Springs. With the temperature regularly reaching 40 degrees, there was no way to avoid sweating. My skin turned the colour of beetroot and often the itching was so bad I’d draw blood. I’d only find relief when I reached an air-conditioned room.
I often visited the doctor begging for help. ‘Maybe try a different soap,’ one suggested. But I’d already used every brand on the shelf! I’d sometimes get so frustrated I’d break down. But even the tears on my cheeks made my skin flare up!
After six years living in the desert, I finally moved to NSW for a cooler climate. Settling there with my daughter Stephanie, 21, and twin boys Steven and Shaun, 13, I hoped for a better life. For a while things improved. The cooler weather stopped me sweating so much but, oddly, I noticed the rainy days were bringing me out in hives. Is there anything I’m not allergic to? I fretted.
...even the tears on my cheeks made my skin flare up!
Visiting a GP, they referred me to a dermatologist who gave me some cream, but that just made the burning worse. Then, three years ago I met Lindsay, 36, and we fell in love. Explaining my lifestyle to him was very hard. ‘I can’t explain why, but certain things make me break out in hives. I can’t get too hot, go out in the rain or go swimming,’ I told him. When I said that even doing the washing up brought me out in a rash, I’m sure he thought I was trying it on! But Lindsay wasn’t fazed. He became my guardian angel. He helped around the house and took the boys on days when it was too hot for me to go outside. But watching him and the twins pile into the car for a day in the sun would break my heart. I wanted to join in!
A year ago I was so fed up, that I decided to give the GP another go. I need to get to the bottom of what this is once and for all, I thought. After being referred to a dermatologist in Melbourne and taking some tests, I was shocked by the diagnosis. ‘You have aquagenic urticaria,’ he said. ‘Put simply, you have an allergy to water.’
My mind started racing. How did I get it? Is there a cure? I couldn’t believe I was allergic to the very thing that’s essential to keep us alive!
‘Put simply, you have an allergy to water.’
The doctor said that experts don’t know what causes it, but aquagenic urticaria is a rare condition where skin reacts badly to water. The rashes and itching were my skin’s way of fighting off what it thought was a dangerous bug. Thankfully, drinking water isn’t an issue.
‘Can you fix me?’ I begged. Sadly it turned out there isn’t a cure, only ways of controlling the rashes, most of which I was already doing. Although relieved I finally had a name for my condition, I felt disappointed there wasn’t more that could be done.
After that, I made it my mission to find out as much as I could about it. I dreamt of meeting someone else with the same allergy! Going online, I couldn’t find much information and after struggling to connect with other sufferers, I started my own group on Facebook called ‘Aquagenic Urticaria’. Over the past year I have connected with over 90 people who have the condition or know someone who does. Now, during sweaty sleepless nights, I go online and chat with fellow sufferers from around the world. Knowing I’m not alone eases the pain.
My daughter Stephanie is also a huge help. When I can’t leave the house, she’ll help with the boys or do the chores. Lindsay and my kids make things bearable.
Hopefully one day there will be a cure, but in the meantime I’m trying to raise as much awareness as I can. Being allergic to water is one of the strangest conditions I’ve heard of. I can’t believe it happened to me!
As told to Riah Matthews
Originally published in that’s life! Issue 2, 2016
Sunlight – Known as solar urticaria, this condition sees sufferers’ skin swell within minutes of being exposed to sunlight.
Shoes – If you see a rash on your feet after wearing leather shoes, you could be allergic to chemicals used in the tanning process. The only way to stop it is to prevent the skin from making contact with leather.
Exercise – In mild cases, the allergy causes hives, but in a more severe form it can lead to anaphylaxis, where the blood pressure drops suddenly and causes breathing issues.
Cold – This allergy can be deadly if a person is suddenly exposed to extreme cold. It can trigger a huge release of histamine, causing blood pressure to drop very low.