A Sussex woman who suffers agonising pain whenever water comes into contact with her skin, says she is determined to try and raise public awareness of her rare condition.
Last year 19-year-old Niah Selway, from Hastings, was diagnosed as suffering from Aquagenic Pruritis, a little-understood and lifelong condition often described as a ‘water allergy’.
She first began to notice her symptoms when she was just five years old, with showers and baths causing sudden, painful outbreaks on her skin. Since then her condition has intensified, with any contact with water – even her own sweat and tears – triggering an excruciating allergic reaction, which can last from anywhere between 30 minutes and three hours.
“I spend every day experiencing some sort of pain from it,” Niah said.
“When water comes into contact with my skin it feels like it’s burning me.
“Part of the problem is that, because it’s so rare, finding a treatment is a bit trial and error.
“I was trying different tablets for around two years, and I was doing UV phototherapy as well, but it essentially just made my skin fall off.”
She says her condition has worsened in recent months, with more serious symptoms and new triggers such as her own sweat.
Another challenge Niah faces is that many people don’t understand how the condition works.
Niah said: “There’s a lot of confusion and disbelief about it. One of the main things people are confused about is how you can be allergic to water when your body is 75 per cent water.
“The answer to that is quite simple. I’m not internally allergic to water. It’s just when water comes into contact with my skin.
“I usually get one of two reactions when I tell people about it. People either say ‘oh my god, that’s awful’ and they are really sympathetic or they just say ‘oh well, I’m sure they’ll find something’. “
To try and improve knowledge of her condition, Niah has setup her own YouTube channel, which can be found by searching her name on the site. Her first video already has more than 54,000 views.
She said:“I’m hoping that it will raise awareness, but also that it might help me find out about new treatments as well. Maybe someone will see something and think of me.
“I’m sort of hoping for a miracle at this point really.”