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Gill's story

In June 2023, our mum began complaining of dizziness/light-headedness that would wash over her throughout the day. During these spells, Mum was unable to speak, and she described it as a scared feeling in the pit of her stomach.

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Lucy's story

Lucy, from London, began experiencing flu-like symptoms in the spring of 2006. Within weeks, she was hospitalised and had a number of seizures on the day she was admitted.

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Steve's Story - Part One

My name is Steve and I work as a trainer within a social services setting. I am a runner (ultra/full/half-marathons), I surf, outdoor swim, mountain bike, play tennis, badminton and occasionally even table tennis. I love to move! That is a truth. Basically any sport outdoors I will give a go. I tell all this […]

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Tony's Story

Sheesh…now where exactly does one start? Since September 2012 I’ve told this story to so many people it’s unreal, but I do think that it’s always been for a slightly different audience to what this telling of the tale probably is. Firstly some of the people reading this will actually know what encephalitis is whereas […]

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Sue's Story

Sue talks about her experiences with meningoencephalitis, its diagnosis, her treatment and recovery. If you are affected by this story at all we encourage you to get in touch with our support team

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Shawn's Story

I woke up with pain in my eye. I usually do not have pain in my eye, unless I stick something in there. I hadn’t, so I thought I’d better pay attention to what was going on. The pain was severe enough that I felt it warranted a visit to the hospital in the hopes […]

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Reggie's Story

Reggie was four-years-old when he became poorly with COVID-19 encephalitis. His parents tell his story.   Sunday, the 7th of February, 2021, was a day we as a family will never forget as this was the start of something that would change our thought process through life forever. Our son Reggie, four, started out with […]

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Pete's Story

Viral encephalitis: the first seven months ‘Errr, I really don’t feel well. Errr, early start but must make it up to the Snow Roads Scenic Route – last day of construction, can’t miss that. And then back to the office for financial year end!’ Three days later, thanks to the smartness, persistence and care of […]

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Paul's Story

For years I was in the ‘wilderness’ of recovery after I suffered encephalitis in 2002/2003. My family and I struggled to come to terms with the person I had become. In one of my many visits to the neurologists, I was told I would never work again, something that for a time destroyed what little […]

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Michele's Story - Part Three

On the 5th September 2014, after a lot of hassling on our part we finally got Ross transferred back to Norwich where he was admitted to the Hellesdon Secure Unit. Ross had his own room. It was a very secure unit with a strict visiting regime but, as a family, we were not going to accept […]

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Michele's Story - Part Two

Over the next day or two we did little walks and went for lunch, in hindsight I now recall Ross again coughing and also sweating when eating. Ross was not sleeping at all and was becoming very distressed. We arranged a back and shoulder massage for him and he tried breathing exercises as well. Nothing […]

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Michele's Story - Part One

If there is one thing I’ve learnt as I have got older is the fact that we cannot control everything that life throws at us. I realise that we can only keep hope and faith but along with that we can and must fight for our loved ones when they need us most and always, […]

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Lorna's Story

In January 2013, I was sent home from work as a colleague recognised that I wasn’t myself. The next day I was admitted to hospital, and four weeks later, after two drug-induced comas, countless investigations and a five-day treatment of plasmapheresis, I was discharged from hospital. I have been extremely lucky. My husband was called […]

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Ken's Story

How do you tell a story when you have no idea about how it began? Late in 1966, as a healthy, robust 2-year-old, I am told that my parents noticed change in my dexterity. Apparently, I had a fixation for taking a piece of cloth and running my hands from inside to out with both […]

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Kelly's Story

Please note: It is very rare for someone to have several relapses of encephalitis. If you have any concerns about your own health, please contact our support team. My name is Kelly and I have had encephalitis four times and meningitis once. I had meningococcal encephalitis when I was 7 months old. I then had encephalitis when […]

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Katie's Story

My story starts on a Sunday when I first got a headache. I’d been to an aquarium earlier in the day and thought maybe the lights had triggered it. I woke on Monday morning and still had the headache but just didn’t feel right, so I called in sick to work. I work for the […]

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Joshua's Story

Hey there! My name is Joshua, and I am a survivor of herpes simplex encephalitis (HSE). It is currently almost eight months since I was diagnosed, but it has taken me until now to honestly reflect upon what happened during that time. Growing up, I was always driven by my family to excel in my work. My […]

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Jim's Story

My name is Jim Kirby and I am recovering from meningoencephalitis. I used to be active, able and always driving myself to be better. I was involved with local communities and charities, always trying to be more when it came to my personal and professional passion for health and social care. In hindsight, I was […]

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Jeremy's Story

In early 2013, I had a kidney transplant thanks to a donation from my wife, Sue. Initially, you have a very low immune system which is slowly strengthened over the weeks and months that follow so your body does not reject the new kidney. Everything was fine until three months later when I went home […]

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Janet's Story

Janet had an epileptic-type seizure one afternoon in January 2007 (writes her husband, Peter). She was at home with me, and I phoned 999. Within about two minutes, the first responders arrived and gave her oxygen and shortly afterwards the ambulance arrived. Janet was taken to the Princess Royal Hospital in Telford. The doctors were […]

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James' Story

There were no warning signs. As usual, James had had a busy week running his brewery business single-handed. The weekend was eventful too. We’d gone to the theatre on Thursday and then for a meal with friends on Friday. On Saturday evening, we went for a meal and to the theatre, then after the show […]

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Isabella's Story

Towards of the end of the half-term holidays in October 2017, my daughter Isabella went from being a lively, bubbly nine-year-old to suddenly complaining of headache and flu-like systems (writes mum, Madalen). Over the weekend, Isabella would only sleep and drink water and go to the bathroom when she needed. She did not have much […]

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Nicholas' story

Nicholas was our eldest and only son, with two younger sisters (writes mum, Sarah). At the age of 16 years, Nicholas was struck down by a completely random virus, which caused encephalitis and subsequent brain damage. He was in intensive care for a long while and had to learn to walk, talk, eat, read, and […]

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Hayleigh's Story

Hayleigh, from London, became poorly with Anti-NMDAR encephalitis towards the end of 2012. As part of her degree at the University of West London in Ealing, she filmed a documentary about her story, speaking to family members, including her twin, Laura, her doctors as well as talking about her own experiences.  

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