A woman who has a severe water allergy says even her own tears leave her in agony.
Kimberlee Mills has Aquagenic Urticaria, an ultra-rare condition that causes painful reactions whenever her skin comes into contact with water.
The 34-year-old can only wash her face once a month and says even brushing her teeth requires careful planning.
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“Aquagenic Urticaria affects almost every part of my life,” Kimberlee, from Houston, Texas, told Need To Know.
“My mornings look completely different from most people’s.
“I only wash my face with water once or twice a month because even that can trigger a painful reaction.
“Most days I rely on rinse-free cleansers and waterless skincare products.
“Before I leave the house, I check the weather.
“If it’s hot, humid or looks like it might rain, I have to think about whether it’s worth going out at all.
“Something as simple as sweating can leave me covered in hives.
“Most people don’t think about water.
“I have to think about it every single day.
“Everything has to be planned.
“I don’t shower every day like the average person.
“Even brushing my teeth requires planning to keep water exposure to a minimum.
“I don’t drink plain water because it makes me extremely nauseous, so I stay hydrated through other beverages and foods that I tolerate better.”
Kimberlee uses waterless skincare products to wash her face.
If exposed to water even for seconds, Kimberlee breaks out in itchy, burning and red hives.
She said: “In severe situations I’ve experienced swelling and symptoms serious enough to require emergency medical treatment.
“The severity isn’t always predictable.”
Kimberlee first began experiencing symptoms at around 12 years old, but said it took more than a decade before doctors finally diagnosed her condition.
She said: “In the beginning everyone thought I was reacting to soap, shampoo or something in the water.
“Over time I realised it wasn’t the products, it was the water itself.
“After years of searching for answers and seeing multiple specialists, I finally underwent a water challenge test that confirmed I had Aquagenic Urticaria.
“The first thing I noticed was intense itching, burning and hives after showering.
“I also reacted after being caught in the rain and eventually realised I reacted to sweat too.
“It took more than a decade to finally get a diagnosis because the condition is so rare that most of the doctors I saw had never encountered it before.
“It was a very long and frustrating battle.
“I was relieved because I finally had an answer after so many years of wondering what was wrong with me.
“At the same time it was heartbreaking because I learned there wasn’t a cure.
“Having a diagnosis finally made me feel like I wasn’t crazy.
“It gave a name to something that had affected my life for years.”
Kimberlee says the condition has also taken a significant emotional toll.
She said: “Living with Aquagenic Urticaria has affected both my mental health and my confidence in ways I never expected.
“It doesn’t just stop me from swimming; it impacts almost every aspect of my life.
“I can’t freely play outside with my children on hot days because sweating can trigger a reaction.
“I have to think twice about taking them to water parks or theme parks because rides, splash zones, rain or even the heat and humidity can leave me in pain.
“Some of the memories parents dream about making with their children simply aren’t possible for me.
“Sometimes it feels like the world was designed around something my body can’t tolerate.
“It can also make me feel like a burden because my family has to help me with things many people take for granted.
“I’ve had to grieve the freedom I thought I’d have.
“The hardest part isn’t being allergic to water, it’s losing the freedom that comes with it.
“I can’t be spontaneous; I have to think about the weather, my surroundings, how long I’ll be outside and whether I’ll sweat.
“Water is something most people never think about but I have to think about it every single day.”
Because the condition is so rare, Kimberlee, who shares her journey with Aquagenic Urticaria on social media @everydaywithkym, says people haven’t always believed her.
She said: “Most people think I’m joking.
“Once they realise I’m serious, they’re fascinated and have lots of questions.
“Others don’t believe me because it sounds impossible.
“That’s one of the reasons I share my journey online.
“As a child I constantly felt dismissed.
“Some people thought I was exaggerating my symptoms.
“Others assumed I simply didn’t want to bathe.
“As I got older, I still dealt with skepticism.
“There were doctors who laughed when I suggested I might be allergic to water or questioned the research I had done instead of listening to what I was experiencing.
“It was incredibly dehumanising.
“I knew something was wrong with my body and I was simply looking for answers.
“Receiving a diagnosis validated years of experiences that so many people had dismissed.”
Kimberlee is sharing her story to help raise awareness of the condition.
She added: “I want people to understand that it isn’t just about being allergic to water.
“It affects every part of my life and requires constant planning.
“I also hope people remember that just because a disease is rare doesn’t mean it isn’t real.
“My goal has never been to gain sympathy; it’s to raise awareness.
“If sharing my story helps someone receive a diagnosis sooner, encourages people to believe someone living with a rare disease or helps others understand invisible illnesses, then every vulnerable moment has been worth it.
“Water is something most people never have to think twice about.
“For me, it’s something I have to think about every single day.”
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