‘I lived as a T-rex after a brain seizure’
When Lucy Evans began roaring and stomping like a T-rex, doctors thought she had bipolar disorder. In fact, she was close to death with a rare brain disease
Loudly roaring L at people in the street and curling her fingers into “claws,” Lucy Evans left passers-by reeling in terror.
However, the 18-year-old was unaware of the commotion she was causing, as she was in the midst of a terrifying delusion where she believed she was a dinosaur.
Lucy only knew about the episode because her mum later told her – and although she had visited several doctors to find out what was wrong with her, no one had any answers.
However, after further tests in July this year, Lucy was rushed to hospital with the terrifying news that she had ANTI-NMDA Receptor Encephalitis – a rare condition that causes the body’s antibodies to attack the brain.
Lucy, who lives in Aberystwyth, Wales, with her mum, Liza Jackson, 52, says: “Initially doctors didn’t know what was wrong with me. I was lucky enough to eventually receive treatment, but I could be living with the side effects for the rest of my life.
HALLUCINATIONS
“Now I look back on when I thought I was a dinosaur and laugh – but at the time my family thought I was going mad.
“My illness means I now struggle to walk, never know when I’m hungry or thirsty and my memory only lasts for four days – but I feel incredibly lucky to be alive.”
Lucy first started feeling unwell in May when she began experiencing increased paranoia, mood swings and vomiting.
She says: “I’d always been completely healthy so it was really worrying. I’d forget to put on my shoes before leaving the house and I was once sick 11 times during one short car journey.”
Things came to a head on 1 June, when Lucy experienced a seizure at home in front of her horrified dad, Stuart, 46. She was rushed to hospital but doctors could find nothing wrong and discharged her a day later.
However, over the next six weeks, Lucy’s condition deteriorated.
She says: “I had crazy hallucinations and became convinced that I was a T-rex. It started when my mum woke me up one day and I told her I was a dinosaur. This happened up to four times a week during the six weeks I was seriously ill.
“I’d stomp around loudly like a dinosaur and circle my arms maniacally. I also plaited my hair to make it look like a tail and I would violently swish it about. I sent photos of my plait to my friends, telling them to ‘look at my tail’ and I adopted a dramatic dinosaur stance when I went for a walk with my mum. It was bizarre – I’d never taken an interest in dinosaurs in my life before!
“I don’t really have any recollection of doing it, but Mum said strangers in the street looked bemused and also scared.”
TERRIFIED
At one stage, Lucy also believed that she was a monkey.
She says: “I left my thenboyfriend 26 voicemails where I made howling and monkey noises, telling him that I had to end our relationship because
I needed to go back to the zoo.
“Nobody knew what to do. A friend bought me a colouring book to take my mind off things, but I became so obsessed that I would do it for hours on end – to the point where my hands became blistered. My family were so scared.”
Doctors wrongly diagnosed her with severe bipolar disorder and suggested she should be sectioned. However, after six weeks, on 4 July, Lucy’s mum took her to the hospital for test results – which prompted her being rushed by ambulance to another hospital 70 miles away. Lucy has little memory of the journey, but her heart rate and breathing increased dramatically and her terrified mother had been told there was a risk she could fall into a coma and die.
Luckily, she made it to the hospital and a doctor who had treated a patient with similar symptoms recognised her condition – which affects only one in two million people – and was able to give her the treatment she needed.
Lucy says: “I was attached to a drip giving me medication for 10 days, including a drug called Rituximab, which works by reducing the white cells attacking the brain.
“My boyfriend of two years broke up with me because he was struggling to deal with what happened. But through it all, I remained positive and just focused on trying to get better.”
On 18 August, Lucy was discharged from hospital and began rebuilding her life.
She explains: “The condition has affected my nervous system so sometimes my leg drags or I get involuntary movements in my arms.
“I also only have a four-day memory span. And although I remember things from before my illness, I worry about how it will affect me in the future – knowing that I’ll never be able to remember big milestones like getting married or having children unless it’s filmed or written down.
“At the moment, I’m taking 24 tablets a day and will have to take medication for the rest of my life to prevent it coming back.
BLOSSOMING ROMANCE
“But I’m just so grateful to still be here and I can’t thank the healthcare assistants on my ward – Rach, Daniela and Louise – enough.”
Lucy has high hopes for the future and has even found love again with Morgan, 24.
She says: “When I was in hospital I began fundraising for the Encephalitis Society and hope to raise £50,000.
“Morgan contacted me through my fundraising page, saying he found me inspirational. We started dating and even though it’s early days, I couldn’t be happier. And now I can even look back and laugh at my previous episodes.”
She adds: “I’m taking one day at a time and am determined to raise more awareness of the condition.”
❛I’D STOMP AROUND LOUDLY AND CIRCLE MY ARMS MANIACALLY❜