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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
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 […]
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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.
Read StoryFull Event Archive
This section is intended for use only on the main Events page.
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) Most of this event will be presented in Swedish and the […]
World Encephalitis Day Alliance Conference Empowering Hope 2026
Please note that this event is an in person event taking place in Denver, United States Overview Join the World Encephalitis Day Alliance for a day of hope, empowerment, and unity at the World Encephalitis Day Alliance Conference 2026 – you won’t want to miss it! Welcome to the World Encephalitis Day Alliance Conference, Empowering […]
My Brain & Medicine 2026
My Brain & Medicine 2026 – Registration is now open FREE virtual (online) event Join us online for a patient event and listen to professionals and lived experience speakers. The presentations are aimed at patients, caregivers and family members with an interest with encephalitis. Starting on Monday, April 27, 2026 at 1:00PM BST, this event will […]
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!
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.
UK Challenges - Run, Tough Mudder, Bungee
Want to run your first 5k? Or how about the challenge of a marathon or obstacle race? There are plenty of challenge options in the UK to support us!
Global Running Challenges
Sight-seeing and running combine brilliantly for these global challenge events. Run through must-see cities and past iconic landmarks whilst supporting Encephalitis International!
Cycling Challenges
From short cycles to epic multi-day international rides, there is a huge range of cycling challenges to choose from. Get on your bike and support Encephalitis International!
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!
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