The photographer allergic to water

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Valentina Bones was diagnosed a decade ago with aquagenic urticaria - a condition so rare that its true prevalence is unknown


A photographer has today opened up about her rare water allergy, which causes a painful rash all over her body if she sweats or cries.

Valentina Bones was diagnosed a decade ago with aquagenic urticaria – a condition so rare that its true prevalence is unknown.

The 25-year-old, who lives in California, breaks out in a rash within two minutes of being exposed to warm water – but can last for much longer in cold temperatures.

Miss Bones claims her red-raw skin is left feeling like she is ‘frying in hot oil’, when she breaks out in hives and rashes from coming into contact with water.   

Her condition has caused cruel strangers to stare at her, which has made her feel insecure, but she has since found ways to control the affects.

Speaking about her ordeal for the first time, she said: ‘For me, any liquid triggers aquagenic urticaria; water, sweat, saliva and even juice from a juicy fruit. 

Valentina Bones was diagnosed a decade ago with aquagenic urticaria - a condition so rare that its true prevalence is unknown

Valentina Bones was diagnosed a decade ago with aquagenic urticaria – a condition so rare that its true prevalence is unknown

‘I don’t do any sports or physical activity that I know will result in me getting unwanted attention due to how my skin looks.

‘I took night classes in college because it was too hot and humid in the classroom during the day. 

‘As long as my body stays dry, my allergy to water does not make my life less happy.’ 

Miss Bones, born in Budapest in Hungary, only realised she had the condition when she moved to California with her family in 2007.

She became concerned when she began getting small red rashes on her face after being exposed to rain or sweat. 

At first, the condition affected her face, chest and stomach the most. But at its worst, 80 per cent of her body was covered in agonising rashes.  

Initially, the doctor first told Miss Bones she had a vitamin deficiency, before they eventually made the diagnosis of AU.

Due to the rarity of the condition, there is very limited data on the effectiveness of individual treatment for sufferers.

Miss Bones tried several allergy and herbal medications but nothing seemed to stop her itching, including Aloe Vera.

But after years of trying different methods to ease her pain, she has developed a way of limiting her contact with water.

The 25-year-old breaks out in a rash within two minutes of being exposed to warm water - but can last for much longer in cold temperatures

The 25-year-old breaks out in a rash within two minutes of being exposed to warm water - but can last for much longer in cold temperatures

The 25-year-old breaks out in a rash within two minutes of being exposed to warm water – but can last for much longer in cold temperatures

Miss Bones claims her skin is left feeling like 'frying hot oil', when she breaks out in hives and rashes from coming into contact with water (pictured: a rash from being exposed to water)

Miss Bones claims her skin is left feeling like 'frying hot oil', when she breaks out in hives and rashes from coming into contact with water (pictured: a rash from being exposed to water)

Miss Bones claims her skin is left feeling like ‘frying hot oil’, when she breaks out in hives and rashes from coming into contact with water (pictured: a rash from being exposed to water)

WHAT IS AQUAGENIC URTICARIA? 

Aquagenic urticaria is a rare condition in which hives develop rapidly after the skin comes in contact with water, regardless of its temperature. 

It most commonly affects women and symptoms often start around the onset of puberty.

The exact underlying cause of aquagenic urticaria is currently unknown. 

Due to the rarity of the condition, there is very limited data regarding the effectiveness of individual treatments; however, various medications have been used with variable success.

Source: GARD 

Miss Bones now stays indoors during rainy season and wears light clothing when it is hot outside, to avoid sweating. 

And she has also managed to find a way to shower without breaking out in rashes. In the summer, Miss Bones showers with cold water, which she can cope with better. 

However, in the winter she uses wet wash cloths or showers with slightly warm – but not hot – water for less than three minutes.  

She said: ‘I wash my hair separately by bending over in the tub, so I don’t have to spend extra time in the shower with water getting in contact with my skin.

‘I take bubble baths maybe twice a year as a treat, on my birthday or Christmas, which makes me really sad because I adore bath bombs; you can find me at a Lush store smelling everything.’  

Her condition has caused cruel strangers to stare at her, which has made her feel insecure, but she has since found ways to control the affects

Her condition has caused cruel strangers to stare at her, which has made her feel insecure, but she has since found ways to control the affects

Her condition has caused cruel strangers to stare at her, which has made her feel insecure, but she has since found ways to control the affects

Speaking about her ordeal for the first time, she said: 'For me, any liquid triggers aquagenic urticaria; water, sweat, saliva and even juice from a juicy fruit'

Speaking about her ordeal for the first time, she said: 'For me, any liquid triggers aquagenic urticaria; water, sweat, saliva and even juice from a juicy fruit'

Speaking about her ordeal for the first time, she said: ‘For me, any liquid triggers aquagenic urticaria; water, sweat, saliva and even juice from a juicy fruit’

Miss Bones tried several allergy and herbal medications but nothing seemed to stop her itching, including Aloe Vera

Miss Bones tried several allergy and herbal medications but nothing seemed to stop her itching, including Aloe Vera

Miss Bones tried several allergy and herbal medications but nothing seemed to stop her itching, including Aloe Vera

Miss Bones continued: ‘For my face the rashes come out from anything liquid at any temperature; hot or ice cold. On the rest of my body it comes out faster with higher temperature water.

“For example, my body can be in a cold pool for half-an-hour without any problems and then it will come out slowly and less painfully.

‘If I get in a Jacuzzi, bath tub or a steam sauna, the rashes will come out within approximately a minute to two-minutes.

‘But it also comes out from sweating after the gym or a dog licking me. So if anyone thinks this may be just caused by “something in the water”, it is not.’

Miss Bones now says the increase in social media activity has helped raise awareness of the rare condition. 

When she first found out about her condition, she claimed there was hardly any information about AU anywhere online.

Miss Bones said: ‘Aquagenic urticaria is so rare that a few years ago it didn’t even have a name. 

‘I remember googling “water allergies” when I was young to find out more information about it.’

Miss Bones now says the increase in social media activity has helped raise awareness of the rare condition (pictured: a rash from being exposed to water)

Miss Bones now says the increase in social media activity has helped raise awareness of the rare condition (pictured: a rash from being exposed to water)

Miss Bones now says the increase in social media activity has helped raise awareness of the rare condition (pictured: a rash from being exposed to water)

Miss Bones now stays indoors during rainy season and wears light clothing when it is hot outside, to avoid sweating (pictured: a rash from being exposed to water)

Miss Bones now stays indoors during rainy season and wears light clothing when it is hot outside, to avoid sweating (pictured: a rash from being exposed to water)

Miss Bones now stays indoors during rainy season and wears light clothing when it is hot outside, to avoid sweating (pictured: a rash from being exposed to water)

Miss Bones said: 'Aquagenic urticaria is so rare that a few years ago it didn't even have a name (pictured: a rash from being exposed to water)

Miss Bones said: 'Aquagenic urticaria is so rare that a few years ago it didn't even have a name (pictured: a rash from being exposed to water)

Miss Bones said: ‘Aquagenic urticaria is so rare that a few years ago it didn’t even have a name (pictured: a rash from being exposed to water)

‘All that came up on Wikipedia was simply water allergy with barely any information. All I could find on it was that it is very rare, and it affects one in twenty-three million people and there is no cure.

‘With the internet and social media growing at an enormous speed; there have been more people coming forward with this allergy and finally someone named it.’

Miss Bones added: ‘I can cover up my body, but I cannot hide my face which bothers me the most. I don’t let anyone see me during that time.

‘At home I just suffer through the pain, however, when it happens in public, it can be quite embarrassing.

‘I remember going to Disneyland once during the day and they had water sprinklers in the air to cool people down. It got on my face and chest, shortly the rashes came out.

‘I tried my hardest not to scratch because the looks I was getting from people was embarrassing enough. 

‘Now I always carry around a light sweater that would cover my upper body in case I got in contact with water unexpectedly.

Miss Bones has offered advice to any other sufferers with the condition, telling them to ‘think ahead’ and plan their day on how they may be exposed to water.  

Miss Bones added: 'I can cover up my body, but I cannot hide my face which bothers me the most. I don't let anyone see me during that time (pictured: a rash from being exposed to water)

Miss Bones added: 'I can cover up my body, but I cannot hide my face which bothers me the most. I don't let anyone see me during that time (pictured: a rash from being exposed to water)

Miss Bones added: ‘I can cover up my body, but I cannot hide my face which bothers me the most. I don’t let anyone see me during that time (pictured: a rash from being exposed to water)

Miss Bones has offered advice to any other sufferers with the condition, telling them to 'think ahead' and plan their day on how they may be exposed to water (pictured: a rash from being exposed to water)

Miss Bones has offered advice to any other sufferers with the condition, telling them to 'think ahead' and plan their day on how they may be exposed to water (pictured: a rash from being exposed to water)

Miss Bones has offered advice to any other sufferers with the condition, telling them to ‘think ahead’ and plan their day on how they may be exposed to water (pictured: a rash from being exposed to water)





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