Woman who almost died from a brain disease and lost use of her leg models in London fashion week 

A woman who developed a rare brain disease while at university and became paralysed in her leg after a severe burn has revealed how she achieved her dream of modelling in London Fashion Week this weekend.

Lucy Dawson, 27, from Lincolnshire, began suffering from migraines while studying at university in 2016, before she experienced what doctors at the time thought was a breakdown.

She was sectioned for three months, and while in psychiatric hospital, given electroconvulsive therapy.

During her time in hospital, she had a seizure and fell out of her hospital bed on to an exposed radiator pipe which burned through her sciatic nerve and left her left leg paralysed below the knee. 

Towards the end of her section, doctors diagnosed her with anti-NMDA receptor encephalitis – an inflammation of the brain that can be caused be an infection or can be autoimmune – and she is now a vocal advocate for those with the disease. 

Lucy works as an activist raising awareness around her condition, and took part in the Unhidden catwalk at LFW to prove ‘there is no specific look, age or uniform required to be disabled’.

Lucy Dawson, 27, from Lincolnshire, developed a rare brain disease while at university and became paralysed in her leg after a severe burn – she is now a model 

She told FEMAIL: ‘Encephalitis left me with an acquired brain injury, as is often the case with those who experience it. 

‘This for me can mean many different things from day to do but common themes are memory loss, confusion, fatigue, trouble concentrating as well as dealing with the mental trauma from the experience.’

In the summer before her final year at university, Lucy had been suffering from migraines, but the student had pushed through and was looking forward to partying and finishing off her degree.

But as her term got under way the usually bubbly 21-year-old became withdrawn, tired and depressed. 

One morning, her housemate came into her room to find her rocking back and forth and trembling – and took her to hospital.

She was sent home by doctors who said she had simply had a panic attack.

The next day she was found screaming and displaying erratic behaviours, even trying to get out of a moving car as she was driven to hospital.

Doctors determined that Lucy had had a severe mental breakdown and that she should be sectioned – a diagnosis which was completely incorrect.

She said: ‘My encephalitis was misdiagnosed as a mental breakdown, and I was sectioned for three months and treated as such. 

To distract herself from her disease, Lucy got into blogging about her experience and connected with other sufferers on social media

To distract herself from her disease, Lucy got into blogging about her experience and connected with other sufferers on social media

‘This meant my illness was untreated and able to progress.’

Lucy was ultimately given Electro Convulsive Therapy – not a treatment for encephalitis – but which Lucy said worked ‘by some miracle’, triggering seizures in her brain.

But horrifically, Lucy’s ordeal did not end there. Further complications led to her becoming paralysed in her lower leg.

While catatonic, Lucy fell from her hospital bed onto a radiator pipe, sustaining a burn through her sciatic nerve.

Lucy was left unable to walk and hardly spoke or move for the next two years of her life. 

She had to relearn everything after her severe injury and as her body dealt with the disease. 

Lucy explained: ‘The years following my illness were a real struggle as I had to learn everything from scratch having had my brain more or less wiped clean – this included walking and talking.’

Lucy took part in the Unhidden catwalk at London Fashion  Week, she said to prove 'there is no specific look, age or uniform required to be disabled'

Lucy took part in the Unhidden catwalk at London Fashion  Week, she said to prove ‘there is no specific look, age or uniform required to be disabled’

To distract herself, Lucy got into blogging about her experience and connected with other sufferers on social media.

She said: ‘I learnt to live with my newfound physical and non apparent disabilities, something that was made easier by the support and solidarity of the many disabled friends I made through social media.’ 

Now she is creating content about the disease full-time and has gained a huge following.

Wednesday was World Encephalitis Day, and there are up to 6,000 cases of the disease in the UK each year and potentially hundreds of thousands worldwide according to the Encephalitis society.

Lucy works tirelessly to raise awareness around the disease, which she says while rare, can affect any one at any time, with thousands of cases per year in the U.K. alone.

‘Encephalitis has a high mortality rate and is often misdiagnosed due to its symptoms such as hallucinations and confusion mirroring those of some mental illnesses,’ she said.

Lucy is now creating content about her rare disease full-time and has gained a huge following online

Lucy is now creating content about her rare disease full-time and has gained a huge following online 

Writing on her blog, Lucy said that as the rate of misdiagnosis remains high, ‘the only way that this will get better is if people are better informed about the disease’. 

‘My greatest aim is that one day, when someone’s friend or family member begins behaving oddly, they will remember the word Encephalitis from that blonde girl with the big hair from Instagram, or that girl who came and droned on and on about it at an event, and they’ll mention it in passing to a doctor, and it may just save a life.’ 

As she continues with her activism and building her burgeoning career as a model and content creator, Lucy said she is looking forward to the future. 

She explained: ‘If my journey has taught me anything it’s that planning too far ahead is never a good idea – life can definitely throw serious curve balls at any given moment! 

‘As far as my hopes, I hope to be able to have taught even just one person the word encephalitis and it lead to a quicker diagnosis and I hope for inclusion of disabled people to improve in all avenues of life.’

What is  encephalitis?

Encephalitis is an uncommon but serious condition in which the brain becomes inflamed (swollen).

It can be life threatening and requires urgent treatment in hospital.

Anyone can be affected, but the very young and very old are most at risk.

Symptoms of encephalitis 

Encephalitis sometimes starts off with flu-like symptoms, such as a high temperature and headache. 

More serious symptoms come on over hours, days or weeks, including:

  • confusion or disorientation 
  • seizures or fits 
  • changes in personality and behaviour 
  • difficulty speaking 
  • weakness or loss of movement in some parts of the body 
  • loss of consciousness 

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