The woman who is allergic to water: 21-year-old YouTube star is left with ‘burning skin’ when she cries and sweats due to rare disorder that’s confined her to her home and made her terrified of rain
- Niah Selway, 21, from Hastings in East Sussex, suffers from aquagenic pruritus
- Crying and sweating brings out painful rashes on entire body that ‘last hours’
- Vlogger, who has 130,000 subscribers on YouTube, struggles to wash herself
A YouTube star who is allergic to water has revealed she can’t sweat, cry or wash herself without breaking out in painful rashes due to her rare skin disorder.
Niah Selway from Hastings, East Sussex, suffers from aquagenic pruritus, which causes her ‘whole body to burn for hours on end’ if her skin comes into contact with water.
The 21-year-old said the burning lasts for hours and she often passes out from exhaustion following a reaction.
She said the condition, which has no known cause and is difficult to diagnose, has left her housebound.
When she cries, her tears bring out a painful rash, and long soaks in the bath are out of the question because they trigger burning inflammation.
Ms Selway said: ‘It doesn’t matter where the water touches me, if a drop touches my arm the pain will spread to my back and torso, sometimes to my whole body.
Niah Selway from Hastings, East Sussex, suffers from aquagenic pruritus, which causes her ‘whole body to burn for hours on end’ if her skin comes into contact with water
The 21-year-old (pictured with her boyfriend Mark) said the burning lasts for hours and she often passes out from exhaustion following a reaction
‘When I have a bath my whole body burns for hours on end. Over time I worked out a routine, either way it’s painful but I have found ways to make it a little less traumatic.
‘For instance, I don’t wash my hair in the bath anymore, I do it separately to feel less pain.
‘There are so many things people don’t think about, such as sweat and tears.
‘Sometimes I’ll have a reaction on my body, I’ll start crying because of it and have one on my face too.’
The YouTube star’s thigh after breaking out in painful blotches (left) and a rash spreads on her hand after coming into contact with water (right)
Ms Selway’s organs are not affected by the disorder, meaning she is still able to drink water
Ms Selway’s organs are not affected by the disorder, meaning she is still able to drink water.
But the vlogger, who has 130,000 subscribers on YouTube, said she’s too scared to go outside in the rain because the reaction on her skin is so severe.
She’s been forced to quit her job at an insurance company while she battles the condition.
She said: ‘I am suffering in a really severe way, and no medication or treatment has had any substantial effect.
‘It is basically a disability because of the things I can no longer do. In the morning I get to the toilet and I’ll have an allergic reaction to the first thing I do.
WHAT IS AQUAGENIC PRURITUS?
Aquagenic pruritus causes its sufferers to experience intense itching when they come into contact with any water.
Its cause is unclear but may be a side effect of conditions such as polycythemia vera, which is a type of blood cancer.
Aquagenic pruritus may also occur as a result of increased circulating histamine levels or as a side effect of certain medications.
There is evidence the disorder may run in families.
The condition’s prevalence is unknown.
Such itching most commonly occurs on the legs, followed by the arms, chest, back and abdomen.
Treatment is challenging due to the disorder being poorly understood.
Therapies often include antihistamines, pain relievers and UV-based treatments.
Source: National Center for Advancing Translational Sciences
‘I also can’t do much exercise apart from yoga and walking because I can’t sweat, and on hot days I’ll have to be stuck in front of the fan. My day is working around my pain.
‘The thought of rain is also terrifying, so I never go outside if there’s the chance it’s going to rain.
‘I am in my own little bubble trying to deal with the pain, and I do what I can whenever it stops.’
Aquagenic pruritus causes its sufferers to experience intense itching when they come into contact with any water.
Its cause is unclear but may be a side effect of conditions such as polycythemia vera, which is a type of blood cancer.
Aquagenic pruritus may also occur as a result of increased circulating histamine levels or as a side effect of certain medications.
There is evidence the disorder may run in families but its prevalence is unknown.
Such itching most commonly occurs on the legs, followed by the arms, chest, back and abdomen.
The itchy reaction is caused by the release of histamine in response to the contact of water on the skin.
Treatment is challenging due to the disorder being poorly understood.
Therapies often include antihistamines, pain relievers and UV-based treatments.
Ms Selway experienced her first reactions at the age of five, and said the symptoms only got worse as she got older.
She added: ‘Initially it would happen about every ten showers. The doctors weren’t showing any concern for it, so I thought maybe I am just not good at dealing with pain.
Ms Selway tragically revealed her most treasured memory was scuba diving in Tenerife in 2013 (pictured) before her condition deteriorated
‘Then in my teens it became every single shower or bath, and it got to the point where I wasn’t able to ignore it.’
‘Most people with aquagenic pruritus seem to find some sort of treatment, whereas for me nothing has worked. It’s difficult to see someone else find relief while it just won’t work on you.’
The YouTuber said her most treasured memory was scuba diving in Tenerife in 2013 and revealed her agony at never being able to do it again.
She added: ‘A lot of plans for my bucket lists where water-related things, like swimming with sharks.
Skin on the vlogger’s leg goes scaly and flakes off after one of her reactions. Ms Selway said sometimes she passes out from exhaustion after coming into contact with water
‘But I gained the ability to enjoy small things and not to be focused on the future. I only have time for positivity and people I love.
The YouTuber said she has accepted that her illness will prevent her from leading a normal life, but revealed she’s being helped through her struggles by her parents Bob and Antonia and boyfriend Mark.
She said: ‘I stopped focusing on what’s going to happen, and try to make now as positive as it can be.
‘My family have been amazing, even in little things, like doing the dishes.
‘They just take all water-related responsibilities away from me, and they have adapted their lives around mine.
Ms Selway revealed she’s being helped through her struggles by her parents Bob (pictured together) and Antonia and boyfriend Mark
‘I always worried when my condition got bad that my friends would leave me because I couldn’t do stuff with them, like going out and clubbing.
‘But they are amazing, they are really understanding and make any effort to try and see me.’
Dr Adil Sheraz, consultant dermatologist and British Skin Foundation spokesperson, said: ‘Aquagenic pruritus is an uncommon and distressing condition that results in severe itching almost immediately after contact with water.
‘Underlying causes remain unknown, theories proposed include breakdown of mast cells that lead to histamine and thus an itch.
‘Although this is an uncommon condition it is probably under-reported and misdiagnosed.’
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