What we know about aquagenic urticaria, or water allergy

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For those who suffer from aquagenic urticaria, or water allergy, the simple act of washing your hands, or taking a shower, or sweating — even crying — can lead to a breakout of burning, itchy hives.

Loren Montefusco, 22, has spent the better part of the last decade dealing with the condition, leading to her abstaining from showering to avoid the itchiness and burning that follows water exposure.

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“It feels like the itch is deep below the surface of my skin,” she told the Daily Mail last month. “I try my hardest not to itch, but I can’t help it.”

Montefusco, who is from South Carolina, added that she will “claw” at her own skin to feel pain rather than the irritation of the itching.

She said she avoids bathing as much as possible, opting instead for body wipes and dry shampoo. She has found a small community online of other individuals who suffer from the condition, which she said made her feel a lot “less gross.”

“It has helped me to find other sufferers and see that others have the same struggles as me because it makes me feel less disgusting about the fact that I have to refuse to shower,” she said.

Here’s what’s known about the rare condition.

What causes aquagenic urticaria?

The first documented case of aquagenic urticaria dates back to the late 20th century, and it’s estimated that there are fewer than 100 cases of the condition globally.

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It’s believed that the allergy originates from an unusual immune reaction prompted by the contact of water with the skin. Water sets off the body’s defence mechanisms, leading to the release of histamine and the accompanying hives, welts and itching.

The pathology of aquagenic urticaria is not fully understood, but scientists have linked specific genetic mutations to water allergy, including those in the FABP5 gene, which is vital for maintaining the skin’s protective barrier. Alterations in this gene compromise the skin’s defence against water, leading to inflammation.

External factors like hormonal shifts or exposure to certain chemicals can also affect the severity of symptoms, according to Nottingham Trent University professors Samuel J. White, a senior lecturer in genetic immunology, and health care scientist Philippe B. Wilson.

What are the treatment options?

Treatment options for water allergy focus mainly on managing symptoms, as there is no known cure.

Antihistamines can help reduce itching, swelling and hives, while corticosteroids, in more severe cases, can be prescribed to reduce inflammation.

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Topical treatments, including barrier creams, have shown promising results in some cases. Applying creams that contain oil-in-water emulsions or petrolatum before water exposure can potentially reduce, or even completely prevent, the appearance of hives in some patients, according to research published in the Journal of Asthma and Allergy.

Ultraviolet light therapy, or phototherapy, can also help reduce the immune response and inflammation. The effectiveness of phototherapy is believed to be related to the thickening of the epidermis, which reduces the skin’s permeability to water.

What about hydration?

While aquagenic urticaria usually manifests as an external skin reaction, allowing affected individuals to consume water without experiencing internal symptoms, there are exceptions.

Tessa Hansen-Smith, 27, started to develop a water allergy at eight-years-old and its severity has increased as she’s aged.

She documents her experiences on Instagram, using the handle “living waterless” and says she has a form of aquagenic urticaria that is both internal and external.

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“I’m allergic to all sources of water, this includes rain, tap, distilled, ocean, bottled, and even includes bodily fluids like sweat, tears and saliva,” she notes in her most recent post.

Last year, in an interview with ABC, Hansen-Smith said she drinks mostly milk because “the water content is buffered by proteins, fats and sugars.”

“There is no cure, there’s just management and medication, and also restriction and avoidance,” she says of the allergy.

Hansen-Smith also notes how psychological support can also play a role in treatment, allowing people to navigate the emotional difficulties associated with living with a chronic and misunderstood condition like water allergy.

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