An 18-year-old girl was convinced she was a dinosaur was just hours from death when doctors discovered her brain was under attack from a rare illness.
Lucy Evans, from Aberystwyth, who also believed she was a monkey in a zoo, was nearly sectioned because she was ‘delusional’ and ‘possessed’.
She was eventually diagnosed with anti-NMDA receptor encephalitis – which affects just one in 75,000 people, figures suggest. It caused vivid hallucinations.
Doctors were originally convinced she needed immediate mental help for her delusional state, but her mother, Liza Jackson, 52 was adamant it was a physical condition.
Eventually a GP, who recognised Miss Evans’ bizarre symptoms, was able to diagnose her correctly with the fatal condition, which causes the body to attack the brain.
When the condition was spotted, they warned she was on the brink of a coma because of the damage to her brain, and that if that happened, she would likely die.
Speaking about her ordeal for the first time, Miss Evans, who has lasting side effects from the condition, said: ‘I was hallucinating and completely delusional.
Lucy Evans, from Aberystwyth, was eventually diagnosed with anti-NMDA receptor encephalitis – which affects just one in 75,000 people
‘It was all the signs of a mental illness. I was so lucky that my consultant had treated someone like me before, or I wouldn’t be here today.’
She continued: ‘I became aggressive and violent. I would have outbursts in public, where I would trash shops.
‘On one day, I started making monkey noises all the time, as I was convinced I needed to go to the zoo.
‘The next day, I thought I was a T-rex dinosaur and plaited my hair, so it could be like my tail.
‘I started to manically colour in colouring-in books too. I did it so much, my hands became blistered.’
Miss Evans added: ‘My mum really didn’t want me to be taken away and fought very hard for that not to happen. I am so grateful for that.
The potentially fatal condition, which causes the body to attack the brain, left her on the brink of death. It also caused vivid hallucinations
One day, she thought she was a monkey, mimicking the animal’s noise. Another, she plaited her hair so that it could be ‘like her T-rex tail’ (pictured with her mother, Liza Jackson, 52)
‘Other people with this condition are mistakenly placed in psychiatric hospitals and their bodies start to shut down. The condition isn’t discovered until it’s really too late.’
When did the condition begin?
Miss Evans’ problems were first spotted by her friends and family, when she was suffering from paranoia, mood swings and bouts of vomiting in May.
I thought I was a T-rex dinosaur and plaited my hair, so it could be like my tail
A doctor initially thought she was suffering from bipolar disorder – a mood disorder, characterised by manic and depressive episodes.
But her problems continued.
The retail supervisor’s problems came to a head on June 1, 2017, when she suffered a seizure in the comfort of her own home.
For around two minutes, her family watched, helplessly, as her eyes fluttered and her whole body shook.
Deeply concerned, they called an ambulance and Miss Evans was taken to hospital but discharged later that day.
As she became more ‘possessed’, doctors told her family that she would need to be sectioned. But they felt sure something else was wrong (pictured having a brain scan)
Eventually a GP, who recognised her symptoms, was able to diagnose her with the condition, also known as autoimmune encephalitis (pictured with her sister Charlotte Jackson, 30)
WHAT IS THIS CONDITION?
Autoimmune encephalitis is a serious medical condition in which the immune system attacks the brain, impairing function.
It caused by a problem with the immune system (the body’s natural defence against infection).
The immune system mistakes healthy tissue in the brain as a threat and attacks it, causing the brain to become inflamed and swell.
The body produces antibodies which attack the NMDA receptors in the brain, which are proteins that cause electrical impulses.
Their functioning is necessary for judgement, perception of reality, human interaction, memory, and the control of unconscious activities such as breathing and swallowing.
It’s not always clear why the immune system malfunctions in this way.
Some cases of autoimmune encephalitis are caused by the immune system reacting to the presence of a tumour (an abnormal growth) inside the body.
The main symptoms are flu like, but people also develop memory loss, difficulty sleeping, and may become unable to communicate or speak coherently.
They might become confused, have hallucinations or exhibit strange behaviour.
Other symptoms include seizures, loss of consciousness and movement disorders.
Source: The Anti-NMDA Receptor Encephalitis Foundation
They then took her to see her GP, who suggested sectioning her, a few days later, but her behaviour continued to deteriorate.
Admitted to hospital
She was then admitted to Aberystwyth’s Bronglais Hospital, on July 4 for tests. But there, her heart rate and breathing became more rapid.
Paramedics rushed her by ambulance to Swansea’s Morriston Hospital, 70 miles away, for more specialist treatment.
She has little recollection of the journey, but her sister, Charlotte Jackson, 30, filmed her in the ambulance constantly singing Rick Astley’s ‘Angels on my Side,’
Meanwhile, her family had been told there was a risk she would fall into a coma and that if that happened, she would be unlikely to survive.
In Swansea, a doctor recognised the symptoms of her rare condition, as she had previously treated another patient with encephalitis.
The woman who saved her life
Miss Evans said: ‘She saved my life. It’s so important for the symptoms to be recognised and treated quickly.
‘I don’t remember anything at all from that time but, looking at the videos that my family made of me, I look like I was possessed.’
At Morriston, Miss Evans was still experiencing delusions and worrying behaviour, so her family withheld her diagnosis from her.
Given scans to check for any tumours and assess the level of inflammation on her brain, she then began intensive treatment.
This involved being connected to a steroid drip, 12 hours a day, for a five day period. It was done to kill the white blood cells that were attacking her brain.
Speaking about her ordeal for the first time, Miss Evans, who has lasting side effects from the condition, said: ‘I was hallucinating and completely delusional (pictured with Charlotte)
Miss Evans’ problems were first spotted by her friends and family, when she was suffering from paranoia, mood swings and bouts of vomiting in May (pictured in hospital receiving treatment)
The second stage of treatment involved being hooked up to a drip containing antibody-rich plasma, for six to eight hours, also for five days.
Miss Evans said: ‘The first two stages of treatment were less effective than doctors had hoped.
‘They told my family that, if the third stage didn’t work, there would be nothing more that they could do.’
For the final stage, Miss Evans was given Rituximab, a drug which works by reducing the B cells attacking the brain. It caused her headaches.
After seven weeks in hospital, she was discharged. But when she came home, three weeks ago, she was still feeling the lasting effects of the condition.
The long term side effects
She said: ‘I had to start by taking baby steps – slowly taking little walks outside. The condition affected my nervous system. If I start to walk quite a lot, my leg drags, or I get involuntary movement in my arms.
‘I don’t get a signal to say if I’m hungry or thirsty anymore and I don’t get a signal to say that I am full. I have to remember to drink a bottle of water with my medication, so I stay hydrated.
‘I have about a four day memory span, I really struggle to remember anything before that period.
‘I am starting to readjust, but I won’t be able to go back to work until January at least. At the minute, I am taking 24 tablets a day and I will have to take medication for the rest of my life, as there is a chance that it could come back.
Despite her ordeal, Miss Evans is looking towards the future and now wants to do all she can to raise awareness of the rare condition
‘Really, though, I think I am so lucky to be here and these problems are quite a small price to pay.’
Broken heart during treatment
Although Miss Evans was in a relationship when her ordeal began, her partner of two years decided to end the relationship while she was in hospital.
But after starting her fundraising for a charity in July, she was contacted by Morgan Stenstrom, 24, who wanted to help.
The pair hit it off and he started to visit her every day in hospital – even travelling to Aberystwyth, the day after she was discharged, to see her at home.
Since then, the pair have been inseparable. Miss Evans said: ‘He’s been so amazing and with me every step of way. He gave me the confidence to go home.
‘My mum believes I would have been in hospital for much longer if he hadn’t been there with me. He was such a rock.
‘My mum and my sister have been amazing as well. I could not have got through this without them. They have been by my bedside pretty much every day. We have always been so close but this has created an unbreakable bond.’
Looking forward to the future
Despite her ordeal, Miss Evans is looking towards the future and now wants to do all she can to raise awareness of the rare condition.
She added: ‘I want to raise awareness now. This condition is so rare and doctors really know very little about it.
‘The Encephalitis Society is a small charity that needs more support to research better treatments.
‘I’m determined to spend as much time as possible helping them now that I’m on the road to recovery.’
Miss Evans is hoping to raise £50,000 for the charity. For more information about her fundraising, visit here.