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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
HSV Encephalitis Lived Experience - Daniel's Story
Although I was very young and don’t remember actually having encephalitis, having navigated through life for 31 years following it, I know I have had it. It is a part of me. It’s with me wherever I go, but it doesn’t define me or who I am. I consider myself, unique. I have always been “different” from others. Always outlandish, always the first to speak and last to stop. As a survivor, I use the term survivor loosely because frankly, no one survives encephalitis as the after-effects never go away, but, as someone who has, through trial and error, through embarrassment, through humiliation, through anger and unadulterated hatred learned to live, cope and succumb to the effects of encephalitis, I am proud not only of my achievements, not only for having some incredible people in my life, but proud to have been able to be simply, me.
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Acute Disseminated Encephalomyelitis (ADEM) Lived Experience - Ella's Story
My mum took me up to the hospital where they put me on a drip assuming it was just a really nasty bug, but I wasn’t getting better. Eventually, the doctors were able to diagnose me with autoimmune meningitis. I was flown in the royal flying doctors from my small town to Perth where I was admitted to a Children’s Hospital. I had a lumber puncture - which is a needle in your spine that draws fluid out that gets sent off for testing, and I was then diagnosed with Encephalitis. Encephalitis is inflammation of the brain and spinal cord.
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Autoimmune Encephalitis Lived Experience - Ana and Jesus' Story
I have been a volunteer with Encephalitis International ever since, sharing our story and information about encephalitis whenever I have the opportunity. By sharing our story at the My Brain : My Story : My Family conference, I hope to help others feel as understood and reassured as I did two years ago, when I first discovered Encephalitis International.
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Unknown Encephalitis Lived Experience - Steven's story of his mum
My journey took an unexpected turn when encephalitis struck my family, taking away my beloved mum. It was a devastating blow that changed my life in ways I never could have imagined. At the same time, I was learning my craft as a teacher, trying to support my students and navigate the complexities of the classroom, all while the world was in the grip of the Covid-19 pandemic.
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Seronegative Autoimmune Encephalitis Lived Experience — Matt's Story
Those two weeks were a blur I know only through stories from my family and doctors. I was tested for serious illnesses like EEE, West Nile, and Zika, all of which came back negative. Then things got even more frightening—I began losing vision and experiencing double vision, though I don’t remember this myself. My body was scanned for cancer, but thankfully, that came back clear too.
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Viral Encephalitis Lived Experience — Julian's Story
During the following 2 weeks, the doctors had spirited debates about the nature of my illness. At first, it was whether I had brain leukaemia or viral encephalitis. Then, when the evidence ruled out leukaemia, it was which type of viral encephalitis; they never found out, with all the tests coming back inconclusive. All the same, there were no known treatments for most types of viral encephalitis. I was given herpes antivirals as a Hail Mary. All anyone could do was wait and see. My body and my brain were the deciding factors now.
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Autoimmune Encephalitis Lived Experience — Kellie's Story
In late December 2022, Kellie's world was turned upside down when Arwen became seriously unwell. She was diagnosed in early January 2023 with Autoimmune Encephalitis, and thanks to the quick thinking of her paediatrician, she was transferred to a specialist hospital for the correct treatment.
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VZV Encephalitis Lived Experience — Tim H's Story
Tim, a father of two young children, felt like he was suffering from flu after a short holiday with his family. He began to feel worse and started to hallucinate. The doctors diagnosed him VZV encephalitis. Here he shares his story.
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Viral Encephalitis Lived Experience — Graham and Sandra's story
During the My Brain: My Story event at the Liverpool Medical Institution, Graham delivers a presentation on the effects of viral encephalitis on him and his wife Sandra 22 years ago and how their family continue to manage its outcomes together.
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Autoimmune Encephalitis Lived Experience — Diane's Story
Diane had autoimmune encephalitis in 2018, she was 15; during the following months she was in a semi-coma state where she couldn’t talk, walk, eat or see due to complete vision loss from high intracranial pressure.
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Lived Experience of Encephalitis — Eduarda's Story
"After the three days I only got worse, so my mum took me to the hospital again. She later told me that on the way to the hospital I started saying things that didn’t make sense. I asked her several times where we were going and why. Within one hour of arriving at hospital, I had two seizures and was sent to the ICU. I don’t have any memory of this, as a matter of fact, I don’t have any memory of most of 2022..."
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Herpes Simplex Virus Encephalitis Lived Experience — Jim's Story
Jim's career included 20+ years with the Port Authority of NY & NJ; however, as a result of his herpes simplex virus encephalitis diagnosis, he retired last February.
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Viral Meningoencephalitis Lived Experience - John's Story
Before developing encephalitis, John worked as principal teacher in a large school for children with complex learning needs in the center of Dublin. He was actively involved both locally and nationally on Education Boards and worked part-time in three of the teacher training colleges. He has been playing piano since he was a child and is convinced that his passion for music was a fundamental part of his recovery.
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Encephalitis and Bereavement Shared by Parents, Louise and Richard — Henry's Story
Henry's parents, Louise and Richard, share the trauma they endured when Henry died. Henry spent one week in hospital after his parents recognized that something wasn't right. After many tests, and eventually surgery, Henry sadly passed away from encephalitis a few days before his 9th birthday.
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Autoimmune Encephalitis Told by Wife, Gail — Dougie's story
Gail shares her husband, Dougie's, story of autoimmune encephalitis. Gail talks about how Dougie went from being very active - running and playing rugby - to battling through the effects of encephalitis. Dougie sadly passed away in April 2024.
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Tick-Borne Encephalitis Lived Experience — Joe's Story
Joe, who was affected by tick-borne encephalitis when he was travelling in Scotland, talks about his lived experience. He had fever like symptoms when he realized something was wrong.
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Anti-NMDAR Encephalitis Lived Experience — Casey's story
I felt my vision begin to swim and before I knew it, I had passed out. That was the last day I spent at Primary school, and I didn’t know. Everything happened so quickly after that day. I lost the ability to walk, to talk, to eat and do anything else all in quick succession.
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Enteroviral Meningoencephalitis Lived Experience — Chloe's Story
Ceinwen's daughter Chloe became unwell with enteroviral meningoencephalitis when she was three-years-old. She has been on the road to recovery for over 11 years. Ceinwen tells her story of encephalitis at the My Brain My Story event in 2023.
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Anti-NMDAR Encephalitis Lived Experience — Abi's Story
Abi is a professional international rugby player for England and Great Britain 7s; competing in the 2021 and 2024 Olympics. In June 2022, she had her first seizure. She was misdiagnosed which led to being sectioned. She was then diagnosed with Anti-NMDAR encephalitis in July 2022. Abi talks about her experience of encephalitis at the My Brain My Story event in 2023.
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Anti-NMDAR Encephalitis Lived Experience — Judiel's Story
Judiel was a nurse when she was diagnosed with encephalitis at the aged of 25 in 2021. She tells her story as part of the Encephalitis International My Brain and Medicine event 2024.
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Herpes Simplex Encephalitis Lived Experience — Steven's story
Steven shares his experience of herpes simplex virus (HSV) encephalitis In March of 2023 at the age of 35, I became sick. At first, I thought it was nothing, just a flu or stomach bug; nothing to worry about. After about 3 straight days of the worst headache of my life, aches and a temperature, […]
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Unknown Cause Encephalitis Lived Experience — Hatice's story
Hatice shares her experience of unknown cause encephalitis My name is Hatice, I am 29 years old and I live in Turkey. I want to tell you my story. in July 2021, I caught the COVID-19 for which I took immunosuppressive medications. These drugs were later removed. I recovered within 2 weeks and there were […]
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Herpes Simplex Encephalitis Lived experience — Elizabeth H's story
Elizabeth shares her experience of herpes simplex virus encephalitis Before encephalitis I’m a 62-year-old woman living in Colorado and have always pursued endurance sports: I was a competitive swimmer for 10 years, specializing in one and two-mile open water events before college. I’ve run 11 marathons, including five Boston marathons and four New York City […]
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Herpes Simplex Virus Encephalitis Lived Experience — Jennifer's story
Jennifer shares her experience of herpes simplex virus (HSV) 1 encephalitis My brain before and after encephalitis I noticed during my research of the brain that it is not typical for people to share their medical history, and I never thought I would be in this position. However, the diagnoses I had are interesting and […]
Read StoryFull Event Archive
This section is intended for use only on the main Events page.
Encephalitis 2025 - Registration
3rd and 4th December 2025 Royal College of Physicians (RCP), London and virtually (Please note the attendance is both in-person and virtual. Those who register will be able to watch the Conference sessions on demand for 60 days after the event) Registrations are now open! (in-person and virtual tickets are available) Book your tickets here […]
Valencia Marathon
A beautifully scenic city route awaits for the Valencia Marathon in Spain. An incredibly popular flat road course offers an opportunity for personal bests or an ideal option for first-time marathon runners.
My Brain & Medicine, Sweden
Please note this is a FREE in-person event only for patients diagnosed with encephalitis, their family members and caregivers. Venue: Elite Hotel Carolina Tower, Eugeniavägen 6, 171 64, Stockholm, Sweden Room: Wilhelm Röntgen Hall Date: Monday 26 January 2026 – 12.30 – 18.30hrs (CEST) (exact timings to be confirmed) Most of this event will be […]
Lisbon Half Marathon (Superhalfs)
The EDP Lisbon Half Marathon forms part of Portugal’s biggest running event and is one of the races in the popular SuperHalfs Series. The route follows the shores of the River Tagus and crosses the iconic bridge, Ponte 25 de Abril, giving you unbeatable views of Lisbon.
Run Rome The Marathon (inc. Relay)
Run Rome The Marathon offers an unmatched route through history, culminating at Italy's world-famous Colosseum. Join 30,000 runners to take in the sights of Rome in the most spectacular fashion, with ambient temperatures and breath-taking views.
Berlin Half Marathon (Superhalfs)
Explore the sights and avenues of Berlin with 35,000 other participants in this half marathon - part of the Superhalfs series. Runners, wheelchair users, inline skaters and hand cyclists are all welcome.
Paris Marathon
The Schneider Electric Marathon de Paris offers a unique opportunity to traverse this iconic French city and experience landmark sights like the Champs Elysées, the Bois de Vincennes, Notre Dame and the Arc de Triomphe.
Edinburgh Marathon Festival
The Edinburgh Marathon Festival offers a varied programme of events across the weekend, with kids races, 5km, 10km, half marathon and full marathon, including the Hairy Haggis Team Relay option for 4 runners.
Great North Run
The AJ Bell Great North Run is the world’s biggest half marathon, with 60,000 runners taking on the 13.1 mile route from Newcastle to South Shields. Register your interest for 2026!
Copenhagen Half Marathon (Superhalfs)
Sight-seeing and running combine - you’ll cross all of Copenhagen’s charming, hip and colourful bridge districts and pass through the historic inner city. A half marathon route with plenty of atmosphere and entertainment!
London - UK Challenges
Run, walk, cycle or take on a Tough Mudder - there is plenty of choice for challenge events in London to support Encephalitis International. Why not browse the options available and join our wonderful community of fundraisers?
Cycling Challenges
From 25km cycles to epic multi-day international rides, we have a range of cycling challenges to choose from. Get on your bike and support Encephalitis International!
Swimming Challenges
Open water challenges - including the Great North Swim - and triathlon options to support Encephalitis International. Swim to show your support!
Midlands - UK Challenges
The Midlands region of England has lots to offer those in search of a great challenge to raise awareness and funds for Encephalitis International. Walks, runs, bungee jumps and obstacle courses await!
North West England - UK Challenges
Bungee jump, run, walk, or take on an inflatable obstacle course to support Encephalitis International in the North West of England. What will you choose? Browse all the options here!
Scotland - UK Challenges
There's plenty of fun to be had in Scotland with fundraising challenges! You can brave a bungee jump, bounce along an obstacle course or tackle a walking or running challenge to raise vital funds and awareness for Encephalitis International.
South West England - UK Challenges
Explore challenge event options available in the South West of England. Will you choose to run, walk, bounce or bungee to support Encephalitis International?!
Wales - UK Challenges
If you're a supporter based in Wales, or just fancy a bit of charity challenge tourism, there are some great walk and run options to explore in support of Encephalitis International.
Yorkshire - UK Challenges
From bungee jumps to bouncing along an inflatable 5k, there's plenty of fun to be had fundraising in Yorkshire. The county also offers a great range of walking and running events.
Ultra Challenge - Walk, Jog, or Run
Whether along stunning coastlines, or trails through wonderful countryside, your Ultra Challenge® will be unforgettable. Walk, jog or run - take on a 10km, 25km, 50km 75km or even a 100km Ultra Challenge.
East of England - UK Challenges
Run, walk, or take on an obstacle course in the East of England, UK. Join our community of fundraisers and support Encephalitis International.
South England - UK Challenges
Take the leap with a bungee jump, bounce along an obstacle course, or choose from a range of distances for challenge walks, jogs or runs. Whatever you choose to support us in the South of England, there'll be plenty of fun!
South East England - UK Challenges
Ultra Challenge on the Isle of Wight, Kent Downs or Chilterns? How about a half marathon or obstacle race? There are plenty of challenge options in the South East of England to support us!
Bungee Jump
Are you brave enough?! Experience the thrill of a lifetime with an exhilarating bungee jump. Perfect for thrill seekers or those in search of an adrenaline challenge!
North East England - UK Challenges
The North East offers a great range of challenges you can take on to fundraise for Encephalitis International. Will you choose running, walking or bouncing through an inflatable obstacle course to show your support?!
SuperHalfs Series
The SuperHalfs Series brings together six epic destination half marathons which runners complete to secure their SuperMedal and a place in the SuperHalfs Hall of Fame. The events take place in Berlin, Cardiff, Copenhagen, Lisbon, Prague and Valencia. What an awesome challenge to take on in support of Encephalitis International!
Inflatable 5k - 2.5km, 5km, 10km, or 15km
A unique inflatable obstacle course you'll need to run, bounce, swing and slide along! Take part on your own or as part of a group with your family (suitable for kids 5 years and over!), friends or colleagues.
Tough Mudder
Tough Mudder creates hardcore obstacle courses designed to test your all around strength, stamina, and mental grit. Innovative courses combine running and a number of obstacles - featuring mud (lots of mud!), ice and 10,000 volts of electricity!
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