A teenager allergic to water claims she cannot cry or shower regularly because she breaks out in painful rashes.
Abigail Beck, 15, from Tucson, Arizona, in the US, was diagnosed with aquagenic urticaria last month after its symptoms first struck three years ago.
The extremely rare condition, estimated to affect just one in 200million people, causes hives to form when their skin comes into contact with water.
Abigail said when it rains or she showers it can feel like ‘acid’, forcing her to only wash once every two days.
She has not had a glass of water for more than a year because it causes her to vomit. Instead she sticks to energy drinks or pomegranate juice, which have a lower water content.
Doctors have been forced to give her rehydration pills and are considering giving her regular IVs to get more fluids into her in the future if her condition does not improve.
Abigail Beck, 15, from Tucson, Arizona, was last month diagnosed with aquagenic urticaria — a condition that causes hives when skin comes into contact with water
Rain feels like ‘acid’ and washing causes her skin to erupt in rashes, forcing her to only take showers once every two days
Miss Beck first experienced the agonising symptoms in 2019 when she had her first period.
The condition is most common in women and usually starts during puberty. It is incredibly rare and only affects one in 230million people worldwide.
Miss Beck first started experiencing symptoms three years ago but was only diagnosed in April.
She said: ‘It took a long time to get diagnosed. It slowly progressed and started getting worse over time. When it rained it hurt really badly, it felt like acid.
WHAT IS AQUAGENIC URTICARIA?
Aquagenic urticaria causes sufferers to break out in hives after their skin comes into contact with water.
There are between 50 and 100 known sufferers worldwide.
Women are more likely to experience symptoms, which typically start around puberty.
The hives are usually red and 1-3mm across. They typically appear on the neck, chest and arms.
Some may also experience itching.
Once water is removed, the rash usually fades within 30-to-60 minutes.
Aquagenic urticaria’s cause is unclear but may be due to a substance in water that triggers an immune response.
Most cases occur randomly with no family history of the disorder.
Due to the condition’s rarity, little is known about how best to treat it.
Therapies typically include antihistamines, UV light treatments, steroids, creams that act as a barrier and bathing in sodium bicarbonate.
Source: National Institutes of Health
‘I thought it was normal so I asked my mum if rain felt like acid to her when it rained and she said no.
‘I asked my mum recently if she remembers me asking that and why didn’t she think anything was wrong. She said she just thought it was something a kid would say.’
Initially, she thought there was something wrong with the water in her house or she may have been having a reaction to skin lotion.
But overtime the symptoms got worse and she realised other people were not suffering the same way she was.
She held off telling a doctor because ‘didn’t want to seem crazy’, she said.
Now, the condition has taken over her life disrupting her ability to shower, exercise and even cry.
She said: ‘My own tears cause a reaction where my face goes red and burns really badly.
‘I cry like a normal person and it hurts. Tears are one of the worst parts of it because when you cry, your tears shouldn’t burn your skin.
‘It runs my life but I don’t want it to. I throw up if I drink water, my chest hurts really bad and my hearts starts beating really fast.’
Miss Beck can only drink a small amount of water at a time and takes antihistamines and steroids to tackle the reactions.
She had a reaction to a sports drink last week that caused her stomach to cramp and pain in her chest for four hours.
Miss Beck said: ‘I have to check labels but everything in this world has water in it. The last time I drank water was a year ago.
‘I’m scared that if it gets out of control one day, no one will know what to do including myself. I don’t even know how to help myself.
‘I try to keep in good spirits and I know that if something did happen then the people around me will do the best they can.’
Aquagenic urticaria is a rare condition in which urticaria — hives — develop rapidly after the skin comes in contact with water.
Its cause is unclear but may be due to a substance in water that triggers an immune response. Most cases occur randomly with no family history of the disorder.
Due to the condition’s rarity, little is known about how best to treat it. Therapies typically include antihistamines, UV light treatments, steroids, creams that act as a barrier and bathing in sodium bicarbonate.
The condition has taken over her life disrupting her ability to shower, exercise and even cry
Miss Beck said the scariest part of the disease is the lack of information as the condition is so rare.
She said: ‘I have no idea what could happen which is scary for me. I never have the urge to drink water at all, I don’t want to drink it, the taste is bad for me.
‘There was talk of me getting an IV line put in so I could take in fluids but that’s more down the road. If things keep progressing, I’ll need a more permanent treatment.
‘I don’t have an epi pen but I have an appointment with an allergist to come up with a game plan and I have a health plan at school so the nurses have a plan ready in case I have a reaction because I could pass out.’
Now, Miss Beck is speaking out to raise awareness of the condition and to help educate people in the hope that they’ll be more understanding about it.
She said: ‘It gets really frustrating. People ask me to explain how it works and I can but I can’t explain why it happens because nobody knows or understands it.
‘I had to educate my doctors about my condition because they’ve never had to experience it before.
‘When I tell people that I’m allergic to water, people think it’s absolutely ridiculous and a lot of people are shocked by it. People always point out that our bodies are made up of water.
‘Some people ask questions which I’m fine with because I’d like to help educate someone so I’m open to answering questions.’