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More on KentOnline
A young woman “allergic to herself” has told how a cruel and undiagnosed disease has robbed her of her life.
Beth Tsangarides’ skin and body react violently to everything from laughing too much to the tears when she cries, which she says “feels like acid” is being poured over her face.
The 21-year-old from Thanet also suffers from mobility issues, fainting and seizures, with many foods, herbs and spices causing life-threatening anaphylaxis.
Despite hundreds of appointments, baffled doctors have branded her a “medical mystery” as her six-year search for answers continues.
She had the first of her flare-ups aged just 15 and now regularly experiences weeping and scabby skin that leaves her looking like “an acid attack victim”.
The mystery surrounding her condition has left her exhausted and stressed, contributing further to the vicious cycle of break-outs that erupt in seconds.
“We've time-lapsed videos of my skin before to watch it weep - I'm watching it quite literally just burn open,” she said.
“It even shocks me every time how quickly it can happen.
'Everything I do affects my skin or my body in some way. Whether I'm laughing too much or crying or emotional, my skin can start flaring.
“I can go from being happy and doing something like colouring to screaming in pain.
“I want to be able to leave my house, I want to be able to go on dates with my partner and go to meals with my family but I can't because there are too many risks.
“It doesn't seem to rest. When I was 15, it went all over my body in tiny little patches and now it covers my whole cheeks like it's taken over my face.”
When first suffering from what doctors called “a serious allergic reaction”, Beth was sent away with some cream.
However, when the symptoms returned with a vengeance she began to spend more and more time in hospitals as medical professionals struggled to deal with the complexity of the case.
In 2020, she was diagnosed with Postural tachycardia syndrome (PoTS) – a condition that causes too little blood to return to the heart when standing up, with symptoms including dizziness and loss of consciousness.
But her skin issues remain undiagnosed, with specialist after specialist referring her to colleagues.
Having been a keen footballer and dancer as a teenager, she is now housebound most of the time and requires a wheelchair when moving around for long periods.
Her illness has robbed her of the chance to do many things with her fiancé Sasha, with reactions to the majority of food making restaurant trips impossible.
Beth’s hopes now rest on an appointment with an immunologist - though there is no guarantee they will be able to provide any answers.
“I'd love to find out what the hell this is, but I'm not asking them to get to the bottom of it straight away,” she said.
“I'm asking for help in treating it, like trying new medications to see if I can handle the pain, trying things to see if they help narrow down the reactions.
“I have no care plan. When I have a flare-up, I'm just left to suffer in pain. If I have anaphylaxis, I'm just left to deal with it because they don't understand the full extent of why I'm reacting.
“My whole health has deteriorated to the point now where I've been handed medical devices to try and help keep me alive, but I've got no answers still.”
Beth’s mum, Melanie, added: “She's meant to be in the prime of her life and we're still not really getting anywhere.
“Beth cannot be the only one that's got this. It's just trying to get to the right person and not just keep getting fobbed off and waiting for promises that they don't actually follow up on.”
Beth’s experience has inspired her to share snippets of her life on social media in the hope of raising awareness and potentially connecting with other sufferers of the unknown illness.
She already has more than 100,000 followers on TikTok and hopes speaking out will better her chances of finding effective treatment and giving her a healthy, normal life.
“I'd be able to catch up on my teenage years, go to parties with my friends and go on holidays,” she said.
“It'd be living in a normal house without worrying, leaving my windows open in summer.
“I'd eat anything I'd want. I'd be able to go on dates with my partner - we've never been to a restaurant together.
“It's everything.”
