Woman reveals how she discovered she’s allergic to water - and how she lives with incredibly rare condition

As a child, Tessa Hansen-Smith played, swam, took baths, and drank lots of water - until things took a turn and she began to develop symptoms which changed her life forever

Faiza Saqib
Wednesday 04 October 2023 16:21 BST
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<p>Tessa shares her story with the world as she battles with Aquagenic Urticaria </p>

Tessa shares her story with the world as she battles with Aquagenic Urticaria

A woman in California has said she is battling with a condition that makes her allergic to water.

Tessa Hansen-Smith, 25, told ABC News she developed Aquagenic Urticaria when she was just eight years old.

As a child, Ms Hansen-Smith played, swam, took baths, and drank lots of water - until things took a turn and she began to develop symptoms.

Now, if she is near water, it causes itching, rashes and hives on her skin.

"I would come out of showers and have huge welts on my skin, and my scalp would be bleeding after showering," Ms Hansen-Smith told ABC News.

"So, the first things we kind of did was, ‘OK, let’s take away your shampoos, take away your conditioner, take away any soaps you’re using.’"

Ms Hansen-Smith, who goes by the name “Living Waterless” on Instagram, often shares her journey with her followers.

In an Instagram story post from November 2019, Ms Hansen-Smith told her followers that her immune system “doesn’t detect every water molecule” which allows her to “get some water in from milk mostly.”

Ms Hansen-Smith shares how she consumes water through other foods

If Ms Hansen-Smith drinks water, she claims she can feel a burning sensation in her throat and body. So, consuming the nutrients she needs through proteins, fats and sugars helps her fight the allergic reaction.

‘It is heartbreaking’

Ms Hansen-Smith’s mother, Karen, is a doctor who has seen many rare illnesses, but seeing her daughter fight this battle has been difficult for her.

"I feel a little guilty as a mom for not having seen when she would get out of the shower that she had hives and figuring it out way earlier that it was a water issue," the mother told ABC News.

"It is heartbreaking. I still have my daughter. But she’s not living the life she wanted to live.”

Ms Hansen-Smith’s positive energy through the process has helped shift her perspective and sharing her story with followers allowed her to be able to “meet so many people and getting to talk to so many people from so many different walks of life really does give me a lot of joy and gives me a sense of purpose with the condition.”

Earlier this year, Ms Hansen-Smith set up a GoFundMe page to not only spread awareness but to also get the support she needs for her medical bills.

“I am disabled and live with my family, who do their best to support me. After my recent hospital stay, and as my condition continues to get worse, we are now struggling to pay my medical bills and make ends meet,” she said on the page.

“I have a few illnesses, but the one that affects my life the most is a rare condition called Aquagenic Urticaria--which means I’m allergic to water, and I have the form where I am allergic both internally and externally.”

Ms Hansen-Smith said her biggest bill comes to about $8,000 “not including other bills for subsequent doctor’s appointments, follow-ups and physical therapy.”

“Thank you so much in advance from the bottom of my heart. Any amount you are able to donate is greatly appreciated, even just $5 can go a long way. If you are unable to donate at this time, a share with your friends and family would mean so much to me and my family,” she added.

What is Aquagenic urticaria?

The rare condition which causes red, itchy hives when exposed to water is estimated to affect 100 to 250 people worldwide.

The allergy was first reported in 1964, according to the Allergy Asthma Network.

Various water sources can trigger hives from this condition, including rain snow freshwater seawater sweat tears.

What are the treatment options?

There is no cure for Aquagenic urticaria but according to Healthline, there are a few treatment options will help relieve symptoms.

For short-term relief, doctors might prescribe patients with antihistamine, which is a medication used to treat allergy-like symptoms.

If symptoms do not subside, doctors may add omalizumab (Xolair) to prevent flare-ups – this again is a treatment for severe allergy.

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