Sheffield woman with water allergy says condition feels like a ‘prison sentence’ 

Maxine Jones, who is allergic to water, with her rubber gloves and cleansing foam
Maxine Jones, who is allergic to water, with her rubber gloves and cleansing foam

For most people, getting caught in the rain would be irritating - but for Maxine Jones it can be excruciating.

That’s because the 50-year-old from Ecclesfield has the extremely rare condition known as aquagenic urticaria, or an allergy to water.

Hives on Maxine's hand after it has been exposed to water

Hives on Maxine's hand after it has been exposed to water

When she comes into contact with even the smallest drop of water, it causes her skin to break out in painful hives and blisters, and makes her hands and feet swell tremendously.

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As you can imagine, that makes it hard not just to get out of the house given the vagaries of the British weather, but to complete even the most basic of household tasks like cooking and cleaning.

She describes the condition, with which she has been living since the symptoms first appeared out of the blue some eight years ago, as a ‘prison sentence’.

Maxine Jones' water allergy causes her to swell up

Maxine Jones' water allergy causes her to swell up

“If I touch water at all the pain is awful. It feels like I’ve broken every bone in my foot, and my body itches all over like I’ve been rolling in a bed of nettles,” she said.

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“I can’t go out if there’s any chance it will rain, which means my neighbours hardly see me during winter. It sometimes feels like a prison sentence.”

Maxine has tried numerous treatments for the allergy, including chemotherapy and pills which made her violently ill.

Maxine with just some of the vast amount of medication she takes daily

Maxine with just some of the vast amount of medication she takes daily

She has now found a combination of tablets which help control the symptoms, but there is still no known cure and relatively little is understood about what causes the condition – which she says has been known to disappear as suddenly as it appeared.

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Even if Maxine takes every precaution to stay dry in the rain, she says it is almost impossible to remove a sodden coat without touching a drop of water.

She only showers twice a year, requiring a heavy dose of steroids to minimise her symptoms when she does so, and the rest of the time she uses a special foam to wash, costing her up to £60 a month.

She must wear gloves even when chopping fruit and vegetables, to avoid any moisture touching her skin, and she must take great care when eating or drinking not to spill anything.

Every part of her body is affected, except for her eyes, nose and mouth.

It took more than a year before her condition was diagnosed, with doctors testing her for all manner of problems before dermatologists eventually managed to pinpoint what was causing the red wheals and swelling.

“It’s a miserable disease and I wouldn’t wish it on anybody, but you just have to learn to live with it,” said the former palliative nurse, who is also losing her sight, requires a wheelchair and has suffered since being attacked about 15 years ago.

“The tablets I take say on the bottle they are also used to treat leprosy.”

Although it is a very rare condition, it does not seem that way to Maxine since so many of the people she meets in the dermatology department are similarly affected.

Her neighbours are fantastic, she says, always ringing or dropping by to check up on her if they haven’t seen her for a few days, and her faithful dog and cats also keep her company when she is unable to venture out, though she has to pay someone to walk the pooch.

The ‘Aquagenic Urticaria – Water Allergy’ Facebook group, which has nearly 900 members, says the condition is not technically an allergy but a ‘hypersensitivity to the ions found in non-distilled water’.

It states that water causes hives to appear on sufferers’ skin within 15 minutes and to last for up to two hours, though Maxine says her symptoms can persist for days.

The British Association of Dermatologists describes the condition as ‘extremely rare’ and states that it usually affects the upper part of the body and wheals usually only appear at or around the site of contact with water.