‘I battled rare autoimmune disease which left me hallucinating while working on the tills at Aldi’
Birmingham Aldi till operator Ciara Wilkie suffers from encephalitis - a rare neurological condition of the brain - which can lead to seizures, mood swings and behavioural changes
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A woman battled a rare autoimmune disease which made her "hallucinate" while working on the tills at Aldi.
Ciara Wilkie, 26, got into an argument with customers and colleagues over "fake" money while suffering from encephalitis. The rare neurological condition causes inflammation of the brain and leads to symptoms including seizures, mood swings and behavioural changes.
Ciara’s boyfriend, Joe, 26, a tattoo artist, became concerned when he found her "rambling" at home and filling three notebooks with scribbles. She was rushed to hospital after having a seizure, and it took medics three weeks to diagnose her. During that time Ciara’s symptoms got worse - until she couldn’t recognise people, forgot how to talk and refused to go to sleep.
Ciara , from Castle Vale in Birmingham, said her "whole life has changed" since the diagnosis - she can no longer do day-to-day things like work, drive, cook, or walk to the shops. She still needs round-the-clock care but is determined to get back on track and raise awareness for her condition.
Ciara said: “I remember arguing with customers and accepting a fake £50 note from someone. Things didn’t feel real and I didn’t feel like I was really there. My sister said it seemed like I had taken drugs because I was so excited and talking really fast when she saw me. Doctors thought maybe I had been spiked or was having a mental breakdown."
In May 2022, Ciara noticed she was having unusual symptoms. She said: “I was setting up a party in the garden for my niece’s birthday when I my head started hurting. I couldn’t see straight so I went home. I thought I just hadn’t drunk enough water or been in the sun too long that day. That was probably the start of my brain condition and I didn’t realise it.”
A couple of days later, Ciara tried to go back to work at Aldi, where her symptoms continued and got worse. She added: “People were talking to me, but I couldn’t understand what they were saying. Things didn’t feel right but I couldn’t explain what was wrong."
That evening, Joe came home from work and found her “incoherently rambling’’ to him. Joe, along with her family - mum Jayne, 47, sister, Alana, 21, and dad Gary, 59 - became increasingly concerned about her as the week went on.
Ciara said: “I was up all night talking to Joe about really deep stuff like space, the universe and other realities. I started writing everything down in notebooks, nothing makes sense when I read them back, but I think it’s the only way I could communicate at the time. My mum and sister thought I was having some kind of mental health problem and contacted my GP for some help.”
Ciara began “screaming all night” and getting more confused until she suffered a terrifying seizure in front of Joe.She ended up biting her tongue and was rushed to City Hospital in Birmingham, in an ambulance. She added: "No one knew what was wrong with me.
“The disease got worse, and I was attacking everybody in sight, including my mum.“I didn’t recognise anyone, not even Joe. I forgot my own name and stopped being able to talk. I stopped sleeping and when my family visited, they would stay up all night with me.”
Doctors finally diagnosed her with anti-NMDA receptor encephalitis – a rare autoimmune disease, where the body creates antibodies against the NMDA receptors in the brain.
Ciara was on a “cocktail” of drugs including antibiotics, steroids, antipsychotics, anti-inflammatories, supplements, sedatives, and pain killers. She said: “My family and friends have been my biggest support and are there for my every day. Joe was working full-time, coming straight to hospital, and spending all night with me.
“I have no idea how he did it. He was even changing my adult nappies and emptying my catheter bags. He watched me turn into someone unrecognisable and still loves me the same as he did before.”
Ciara had 15 plasma exchanges, which removes the disease from the plasma in her blood - replacing it with new plasma fluid. By December 2022, she slowly started to feel like herself again and after two months in hospital, she was finally discharged.
Ciara was put on a new medication to reduce the chances of relapsing and says the condition has “changed her perspective on life”. She will continue to have appointments with a neurologist specialist and further scans to monitor her progress.
She said: “Everything I do requires more effort than before. It has affected my memory, mobility, and my balance - I struggle to walk very far and I sometimes use a walking stick. I am still processing what has happened to me this year and learning to adjust to a new life.
"I have got a long journey ahead of me before things start to feel normal again. I try to take every day as it comes, some days are better than others. I have found my love for writing again and have really enjoyed sharing my story, I want to raise awareness too.”
Ciara is still employed by Aldi, having worked there since 2018, and the company have been very supportive in allow her time off to recover, she said.