Doctors still can’t tell Haley why she breaks out in this horrendous rashes (Picture: PA Real Life)
A healthcare student is so allergic to water that getting caught out in the rain brings her skin out in huge itchy welts.
Haley Diaz, 23, from Miami, Florida, was 14 when she first got a rash on her torso, face and arms while she was showering.
But it took six years, and her own research, for doctors to finally diagnose her with aquagenic urticaria – an extremely rare condition which has only been recorded 50 times in medical literature, according to clinical platform UpToDate – where the skin comes up in itchy hives after contact with water.
Unable to swim in the sea or take a bath, Hayley’s condition makes washing her hair an ordeal and stepping out of the house in bad weather a well-planned operation.
And while studying for her degree, she completed a 30-day experiment on herself to see if she could cure her own condition.
The masters student at Miami Dade College said: ‘At first, it was really hard to deal with. I used to cry as a kid and felt left out when I had to sit at the side at pool parties or stay on the beach.
The welts itch for hours after they flare up (Picture: PA Real Life)
‘I could join in, but I knew I would have to pay the price – an hour of non-stop itching.
‘Now, as an adult, it’s just something I live with; everyone has something unique about them, mine’s just a bit different to most people’s.’
A keen swimmer and competitive cheerleader as a child, this all changed aged 14 when Haley began breaking out in hives.
‘I went for a shower and I broke out for the first time. It was horrible,’ she says.
‘I rushed to show my parents and they had no idea what was going on – they thought it may have been an allergic reaction. Soon, it started happening every single day.’
Doctors initially diagnosed her hives as being brought on by heat, rather than water, and told her to take cooler showers.
Her head and neck are two of the worst-affected areas (Picture: PA Real Life)
‘I just had a feeling it was the water, because I wouldn’t get the rash other times when I was hot,’ she says, adding that it even started happening when she sweated.
Scared her condition could send her into anaphylactic shock – a potentially fatal side effect of some allergies – Haley tentatively exposed herself to water for longer periods to see how her body would respond aged 15, but thankfully she has never had more serious side effects than the rash.
Nevertheless, the condition affected her social life when she was younger.
‘It was so hard to explain to my friends and classmates that I was allergic to water,’ she says.
‘I didn’t fully know what was wrong with me at that stage and people would think it was a joke, that I just didn’t want to get my hair wet or something.’
In Haley’s case, the hives do not affect her legs, feet, or arms below the elbow – which she has no medical explanation for.
Her torso, upper arms, neck and face are the worst affected areas.
Haley found it hard to explain to kids at school that she was allergic to water (Picture: PA Real Life)
She has to wash her hair in the sink, because she can’t bear to be submerged head-to-toe for long enough to shampoo and condition, but she refuses to shower less than once a day.
‘I try to keep showers shorter than five minutes and keep my face away from the water.
‘I always face away from the shower head because the itching is so much worse on my front, and I have to shower in the evenings, because they leave me feeling so exhausted.
‘I’ve never been told why water does this to me – there is a lot of debate at the moment as to whether my allergy is an autoimmune condition or not.’
It takes from one to two minutes of contact with water for Haley’s symptoms to flare up – and it is not just water that sparks her allergy.
‘One time, someone sprayed perfume on me and that caused me to break out,’ she recalls.
‘I was also at a house party about two years ago and this guy accidentally spilled alcohol on me, which soaked through my top and started giving me a rash on my stomach.
People make mean comments and assume Haley doesn’t wash. (Picture: PA Real Life)
‘He was super apologetic and I rushed to the bathroom to get it off – he had no idea it wasn’t because I was worried about a stain.’
Every morning, Haley has to check the weather to see if it is going to rain, as a Florida deluge could leave her itching for hours.
Hot days are also problematic.
‘If it is hot, I always park as close to school as I can so I don’t sweat too much, and I’ve got a fan adaptor which I can plug into my phone,’ says Haley.
‘Sometimes I’ll even walk around with ice packs down my top to keep myself cool.
‘As they’re at the base of my spine, the itching isn’t so bad there if the water causes a bit of a breakout. And if it does, it’s a case of picking the lesser of two evils.’
Even now, Haley faces ill-informed comments from other adults.
‘The two biggest misconceptions about my condition is that I can’t drink water and that I don’t wash. I’ve had people say, “wow, you must stink.”
‘Neither of these are true though. Some people who have a severe form of my condition can’t drink water, but thankfully I’m not one of them.’
It was when she began studying at Nova Southeastern University in Florida to become a physician assistant aged 18, that Haley finally decided to use her medical knowledge to get an official diagnosis.
‘Some new research had just been published so I took that information to my doctor, and convinced them to run tests.
‘I finally got diagnosed aged 20, six full years after the symptoms began. That’s the problem – it is still so unknown, even by doctors.’
And having tried antihistamines with no success, Haley decided to experiment on herself as part of a project in her second year as an undergraduate – sharing her findings with her course.
‘There’s this homeopathic product. I decided to see if it helped my condition by swallowing a tab for 30 days straight and conducting tests each day,’ she says.
‘Some days my hives were completely gone, even after a shower – but other days they returned so it was inconclusive in the end.’
Haley hopes to one day set up her own practice focusing on supporting people with chronic health conditions.
‘I always like to find the silver lining in everything, and in my case, my water allergy means I’m more empathetic to others and that also makes me better at what I do,’ she says.
‘I’ve always been a patient first and foremost – it gives me a different perspective to other medical professionals, so I’m grateful for that.’
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