Encephalitis: 'Friendly fire' in my brain saw me sectioned in error

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Listen to the podcast: Model Lucy Dawson on how “friendly fire” within her immune system led to her becoming disabled

Model Lucy Dawson was 21 when she was sectioned in error due to an illness that was difficult to diagnose. During a three-month stay on the psychiatric ward an accident would leave her permanently disabled.

"At one point I really thought my life was over, I was so depressed," Lucy says. "But somehow I managed to turn it around - I was so unlucky, but at the same time I'm so lucky to have persevered."

Lucy was in her final year studying criminology at the University of Leicester in 2016 when she became ill and underwent a complete personality change.

"Over the period of about a week my behaviour did a complete 180," the now 25-year-old says. "I went from being bubbly, lively and social to being completely depressed and crying all the time.

"I would say 'I'm fat, I'm ugly. Nobody likes me, I don't have a boyfriend, I'm going to fail my degree' - it was all things I'd never cared about before."

In the early hours of one morning, Lucy's housemates were woken by her screaming. They took her to hospital and were told she was experiencing panic attacks caused by stress. They gave Lucy breathing exercises and sent her home.

But the following morning she began screaming again.

Image source, Lucy Dawson

"I was rocking back and forward, my eyes were completely dilated and I had torn my bedroom to pieces," Lucy says. "I only have vague memories and flashbacks of this period.

"My mum and dad drove down and when they found me they were horrified - they were asking my housemates 'has she taken drugs or is there any chance she's been spiked?' and they told them: 'No chance'."

Lucy's parents bundled her into their car and drove to hospital. During the drive her behaviour became so erratic she attempted to jump out of the moving vehicle.

Once at hospital, her parents were told she was experiencing a "mental breakdown" and needed to be detained under the Mental Health Act. She was placed in a psychiatric ward, where she would remain for three months.

Lucy was treated with anti-psychotic drugs but her condition rapidly declined.

"I was extremely ill and seeing hallucinations, and then parts of my body and my brain started shutting down," she says. "I had become catatonic, which is where you're in a rigid stupor and you can't feel your own body."

Medics were baffled by her deterioration. On her 21st birthday, a month after she was admitted to hospital, doctors told her parents she would have to undergo ECT (electroconvulsive therapy) or she would die.

Lucy underwent three rounds of the treatment which involved sending an electrical current through her brain using two padded electrodes placed on her temples to trigger a seizure. The procedure is given under general anaesthetic.

MIND, the mental health charity, says ECT is sometimes recommended for severe depression or when the situation is thought to be life threatening.

For Lucy, the treatment "sort of shook my brain into resetting" and stopped the illness progressing.

"But unfortunately, that's not where it ended," she says. "Because after the ECT they put me back on my ward and I was left alone."

Image source, Lucy Dawson
Image caption,
Lucy during her three-month stint in hospital

Lucy was in bed, but was still having seizures. That November night she started to fit and fell from the bed onto an exposed radiator pipe, which was extremely hot.

"I was catatonic so I didn't feel anything. I just laid on it burning, until someone found me."

Lucy's parents were told she'd "had a little fall" but the extent of the burn's damage wouldn't be discovered until months later when she was learning to walk and talk again.

"It was actually a third degree burn, all the way through my left bum cheek."

Just before Christmas 2016, Lucy was discharged from the psychiatric unit.

But it wasn't until January the family finally received a diagnosis for Lucy's illness. She hadn't experienced a mental breakdown - she had, in fact, had encephalitis, a rare but serious inflammation of the brain which can be fatal if not treated quickly.

It is sometimes caused by viral infections or by the immune system mistakenly attacking the brain, known as "friendly fire", which is what Lucy experienced.

It can be difficult to diagnose, as symptoms can develop over hours, days or weeks, and include confusion or disorientation, changes in personality and behaviour, difficulty speaking and loss of consciousness.

Encephalitis can damage or destroy nerve cells (neurons) and this damage is classed as an acquired brain injury. Survivors often experience completely different outcomes.

A Lincolnshire Partnership NHS Foundation Trust spokeswoman told BBC Ouch: "We are truly sorry for any care that fell below our expected standards and the impact this has had on Lucy and her family.

"We are committed to delivering high quality, safe patient care and have a robust internal investigation process in place to learn lessons for the future."

Image source, Lucy Dawson

When Lucy returned home she was sleeping 23 hours a day as she recovered.

"I had to learn everything again from scratch, learn to talk again, learn to walk again, I couldn't read or write and I was absolutely devastated."

Luckily for her, her grandfather, a retired teacher, decided to take an active role in her recovery.

"My favourite singer is Elvis Presley, so my grandpa bought every single Elvis songbook off the internet and learned how to play them all on the keyboard," she says. "That's how I learned to speak again - by singing along to the songs."

But she was still struggling to walk and her mental health was suffering.

"I watched all my friends graduate on the live stream on Facebook and I really thought my life was over," she says. "I was so depressed, and I said to my family 'I wish I had never woken up'."

A year after she was discharged, Lucy finally discovered why she was still struggling to walk.

The burn sustained on the radiator had gone through her sciatic nerve, permanently paralysing her lower leg.

Although this was a devastating revelation, knowing what the issue was meant Lucy and her family could move forward.

Between the singing, daily word games and walking short distances with a frame, Lucy recovered to the point where she could return to university and finish her criminology degree.

Following her graduation Lucy, who now wears a splint on one leg and uses a walking stick, attended a casting for Zebedee model management and was signed up.

Lucy's modelling career took off and she always likes to to flaunt her collection of colourful and sparkly mobility aids, which she hopes will help increase the representation and visibility of disability in the media.

She has so far worked with brands including Ann Summers, Love Honey and Missguided.

"I don't feel any shame about posing in lingerie," she says. "Disabled and sexy aren't two mutually exclusive terms.

"But you very rarely see any disabled people in fashion campaigns let alone lingerie campaigns, so that's something we need to keep working towards."

Lucy hopes to continue increasing the visibility of disability and raising awareness of encephalitis and was a winner at The Role Model Awards 2019 for her campaign work.

"Who knows what the future holds," she says. "If my experience has taught me anything, it's that you really can't plan out your life."

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