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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
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 […]
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Anti-NMDAR Autoimmune Encephalitis Lived Experience — Rachael M's Story
I don’t remember anything from my admission until fuzzy memories of my time in inpatient rehab. By the time I reached the hospital I was catatonic, and seizures were starting to take over, free fall which lasted for days, weeks, eventually resulting with me being placed on life support for months.
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Influenza Encephalitis Lived Experience — Audrey B's Story
By the next morning Audrey’s lethargy and vomiting continued and progressed to where she was completely obtunded, nonverbal and with rapid eye movements mimicking seizures. We were rushed back to the ER via ambulance where she received a full work up (CT, lumbar puncture, EEG, MRI, etc). She was diagnosed with influenza B encephalitis.
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Anti-LGi1 Autoimmune Encephalitis Lived Experience — Juliette's Story
These moments of "disconnect" were characterized by a temporary sensation of leaving my body, accompanied by an electric shock to the head and a metallic taste in the mouth, similar to episodes of "trances" lasting about 10 to 15 seconds. Initially, these episodes occurred when I was alone, and I didn't talk to anyone about them.
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Herpes Simplex Virus Encephalitis Lived Experience — Tim's Story
One day in May 2014, I woke up with a high fever (103+), and a severe headache that wouldn’t go away. This was odd because I was never sick before. I was 48 and in the best shape of my life at the time, as a personal trainer, a P90X Xtreme finisher, a soccer coach, and new to the obstacle racing sport. I was extremely active as a parent and husband and never stopped moving.
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Anti-LGi1 Autoimmune Encephalitis Lived Experience — 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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Herpes Simplex Virus Encephalitis Lived Experience — 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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Meningoencephalitis Lived Experience — Kevin's Story
In 2019, Kevin was working as a Proctor when he became ill with meningoencephalitis. The illness left Kevin with anxiety, a number of physical symptoms, while noisy environments mean his brain can easily become overwhelmed. These encephalitis after-effects would eventually lead to his retirement with long-term disability in 2022.
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Autoimmune Encephalitis Lived Experience — Tony's Story
I came home from work, had a fever for a couple of days and then started having convulsions (glad I don’t remember biting my tongue) and was taken into hospital (having punched a paramedic on the way there!). From that point on, my family insisted my condition was worse than the doctors thought and finally they managed to get me in front of an expert who took my symptoms seriously.
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Herpes Simplex Virus Encephalitis — Yvonne's Story
This is Yvonne's lived experience of Herpes Simplex Virus Encephalitis, including what she struggled most with and how she dealt with those issues.
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Varicella Zoster Virus (VZV) Lived Experience - Shawn's Story
I could feel myself growing tired—quickly. I was “fading fast”. Everything went black, and then the next thing I knew, I could only see plaid. I could also hear sounds, but none of them made sense to me. As I reflect back on that moment, I think it was that time after a seizure when someone is confused. I could see and hear, but could not understand any of it.
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Herpes Simplex Encephalitis Lived Experience - Ross' Story
During the first six months of recovery my physical well-being was shot, and my mental state was crazy. I slept a lot and I had no memory at all of the six weeks I spent in hospital, let alone prior to the episode. My memory is still real patchy - past and present! But I don’t get depressed about it, I just laugh at myself.
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Autoimmune Encephalitis Lived Experience - Richard's Story
Richard, who was affected in his 20s, talks about life following encephalitis. He shares his experiences of the after-effects of his encephalitis, his interest in mindfulness, and living in the present.
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Herpes Simplex Encephalitis Lived Experience - Richard's Story
Richard, a conductor from the USA, talks about how he has had to embrace new emotions as part of his ongoing recovery from Herpes Simplex Virus Encephalitis.
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Covid-19 Encephalitis - Reggie's Story told by his parents
Our son Reggie, four, started out with a temp of 38 degrees centigrade. We thought it was just another viral infection. The temperature stayed up until the Wednesday, with Reggie not eating or keeping fluids down. He was very lethargic, there was no much movement and a rash on his back.
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Herpes Simplex Virus Lived Experience - Rachel's Story
Rachel talks about her experience of encephalitis including fatigue and memory loss but how she will not allow the changes it made to her life define her.
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Autoimmune Encephalitis Lived Experience - Polly's Story
Polly describes her lived experience of autoimmune encephalitis including her symptoms, treatment and recovery.
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Viral Encephalitis Lived Experience - Pete's Story
Pete shares his lived experience of Viral Encephalitis. He shares his journey though diagnosis, treatment and recovery.
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Meningoencephalitis Lived Experience - Paul's Story
Paul shares his lived experience of Meningoencephalitis. This includes his symptoms and how it affected his life, but also what helped in life after Encephalitis.
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LGi1 Autoimmune Encephalitis Lived Experience - Pauline's Story
Pauline was affected by autoimmune LGI1 encephalitis in 2015 and then again in 2017. Here she shares her story and experiences with us. This film is part of our My Brain and Me Project.
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Viral Encephalitis - Nicholas' Story - 5 years on
Five years on for Nicolas's mum. Sarah talks about her son's battle with the after effects of viral encephalitis. Nicolas fought for over 20 years before losing his life.
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Herpes Simplex Encephalitis Lived Experience - Natasha's Story
Natasha had encephalitis when she was just two years old. Here, she shares examples of her lived experience including fatigue and changes to her co-ordination.
Read StoryFull Event Archive
This section is intended for use only on the main Events page.
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. 2025 places SOLD OUT - register your interest for 2026.
Thames Path Ultra Challenge
Whether you choose to walk, jog or run - England’s most famous river provides a fantastic backdrop for an unforgettable Thames Path Ultra Challenge. Distance options include 100km, 75km, 50km, 25km and 10km.
Family Resilience Day
Please note that this event is now postponed until next year (2026). Exact dates and location to be announced in Autumn. If you are interested, please put your name on the waiting list by emailing Julie at julie@encephalitis.info Having details about kids’ ages and requirements would be very helpful for us to plan this event. […]
My Brain & Medicine - New York, United States
Please note this is a FREE in-person event only for patients, family members and caregivers. My Brain & Medicine. Encephalitis Survivors and Caregivers Day Venue: New York-Presbyterian/Columbia University Irving Medical Center, 50 Haven Avenue, Suite 109 , New York, NY 10032, USA Room: 50 Haven Ballroom (in the Lower Level) Friday 26 September 2025 – […]
My Brain My Story 2025
Please note My Brain : My Story is a hybrid event (in-person and virtual via Zoom) We would love you to join us in York, England, – or virtually – at My Brain : My Story on Saturday 4 October 2025. This event is a hybrid event for anyone who wants to listen to the […]
Great Scottish Run
The Great Scottish Run offers a half marathon and 10km option in the vibrant and friendly city of Glasgow. Urban architecture combines with green spaces and riverside views - a great way to explore this part of Scotland.
Cardiff Half Marathon (Superhalfs)
Cheering crowds, entertainment and a scenic road route are on offer at the Cardiff Half Marathon. What a fun and memorable way to challenge yourself and support Encephalitis International!
Chicago Marathon
An ever popular option, the Chicago Marathon attracts 40,000 runners each year. A flat road course explores the city - a great way to combine an epic challenge with some sight-seeing!
Great South Run
The AJ Bell Great South Run is probably the world’s favourite 10 mile running event, with inspiring history, salty seaside air and glorious views across to the Isle of Wight, as you weave your way around Portsmouth and Southsea.
Dublin Marathon
The Irish Life Dublin Marathon offers an unmissable opportunity to run through iconic landmarks like Phoenix Park, along the River Liffey, and past historic Georgian streets. With a relatively flat course and enthusiastic local support, it's a popular event with 22,000 runners.
Valencia Half Marathon (Superhalfs)
Part of the popular SuperHalfs Series, Valencia Half Marathon offers fabulous city scenery and a flat, fast course. A great option for a 13.1 mile challenge in support of Encephalitis International.
Encephalitis 2025 - Registration
3rd and 4th December 2025 Royal College of Physicians, London and virtually Registrations are now open! (in-person and virtual tickets are available) Book your tickets here ENCEPHALITIS 2025 is an excellent forum for physicians, scientists, researchers, and healthcare professionals to exchange ideas, knowledge and clinical experience relating to encephalitis. You can join us in-person at […]
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.
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.
London Landmarks Half Marathon
London Landmarks half marathon features Tower Bridge, Nelson's Column and Big Ben - the only half marathon to go through both the City of London and City of Westminster and one of the largest fundraising events in Europe.
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.
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!
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!
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.
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.
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?!
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 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!
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!
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!
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!
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?!
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.
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?
Swimming Challenges
Open water challenges - including the Great North Swim - and triathlon options to support Encephalitis International. Swim to show your support!
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!
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!
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.
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.
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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