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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
Acute Disseminated Encephalomyelitis (ADEM) Lived Experience - Regináe's Story
My name is Regináe and I was 4 when I was diagnosed with Acute Disseminated Encephalomyelitis (ADEM). My dad noticed that I was acting strange and acting like I was possessed, then all of a sudden I started shaking constantly and couldn’t stop. My parents then admitted me to hospital and they didn't know what was wrong with me.
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Acute Necrotising Rhombencephalitis Lived Experience - Eldon's Story
In April 2023, life as I knew it changed in an instant. It began with an ache in my lower back—something I brushed off as a minor strain. I even visited an osteopath, convinced I had just overdone it somehow. But the discomfort didn’t ease. Within days, I tested positive for COVID-19, and soon after, the real nightmare began.
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Anti-NMDAR Encephalitis Lived Experience - Alice's Story
I was a healthy 27 year old woman who loved paddled boarding and aerial circus prior to being diagnosed with Anti-NMDAR Autoimmune Encephalitis. I was on a weekend away with my mother and partner in England and complained of sore ears. Later that night I took my first seizure and an ambulance was called! My symptoms began suddenly, manifesting with seizures, manic psychotic episodes, hallucinations, agitation and oral facial dyskinesia.
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Tick-Borne Encephalitis Lived Experience - Antti's Story
I got tick-borne encephalitis in autumn 2023, here some memories and insights of the complex journey with the disease. The whole thing started in a Teams meeting with a customer. I suddenly felt quite nauseous and had to close the meeting early, started to vomit and horrible headache begun. Luckily, I was at home and my wife came soon to check my situation. Later, I heard that she took me to an emergency unit at the University center hospital next day when my fever raised up to 41 ˚C – I don’t have any clear memories of that.
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Anti-GAD Encephalitis Lived Experience - Alison's Story
Alison shares her experience of Anti-GAD encephalitis and how she went on to raise funds through her gym, Life’s Peachy’ Fitness for Encephalitis International. I started falling sick in April 2024 after my husband came home from a work trip with stomach bug. He was better within 24-48 hours while I got progressively more unwell. I […]
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Autoimmune Encephalitis Lived Experience - Diane's Story
Diane had auto-immune encephalitis in 2018, when she was 15 which encompassed months 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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Anti-NMDAR Encephalitis Lived Experience - Vickie's Story
I don’t remember anything. My first memory is of me being told that I couldn’t go back to work, I was very ill, and those of you who have had it remember what that feels like. I was apparently in an induced coma, had a lumber puncture, seizures, nearly died… and I was lucky to be speaking and as recovered as I could be.
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Anti-NMDAR Encephalitis Lived Experience - Roz's Story
Roz, who was affected twice by anti NMDAR encephalitis while completing her secondary education, shares her story with us. The video was filmed as part of our My Brain and Me Project.
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Meningoencephalitis Lived Experience - Kristen's Story
In May of 2023 I started with a very high fever. I passed it off as normal; as I got sick very often, just had pneumonia a month prior. I work with young children which I believe weakened my immune system over the years. I’d only travelled out of the country 8 months ago but was otherwise fine. After day 2, the fever wasn't subsiding and came out in a red rash in my extremities, prompting me to go to a doctor.
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Herpes Simplex Virus Encephalitis - Ismael's story, told by wife, Rosa
For me, as his wife, has been a challenge to adapt the new family dynamics with the illness. My advice to all of us who have a family member with encephalitis is that as primary caregivers we take care of our physical and emotional health. In my case, I had to attend psychotherapy and take medication for depression and anxiety.
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West Nile Virus Lived Experience - Jim's Story
I went on holiday to Goa in India in March 2024 . I remember getting a couple of mosquito bites but they don't usually affect me, so thought no more of it. Upon return to the UK, after a couple of days I started to feel unwell, after another couple of days it got much worse and I researched the symptoms and thought it may have been Malaria. 6 days after returning from holiday I called 111 and as a result was taken into hospital in Southampton.
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Anti-NMDAR Encephalitis Lived Experience - Matt's Story
Matt, an architect from South Africa, was diagnosed with Anti-NMDAR encephalitis in 2019 while living in Germany. His story was filmed as part of the My Brain and Medicine event on 25th April 2022.
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Human Herpes Virus-6 (HHV-6) Encephalitis Lived Experience - Lizzie's Story
Before my brain decided to hit the eject button on my memories, I had a life that made sense. I ran an animal rescue that I had started years before. It was busy and, at times, chaotic. I had my routines - work and home ones. I knew what I was doing (most of the time). I could tell you where I left my keys. I could tell you who the actor on the screen was and his entire filmography. My memory was actually my superpower.
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Viral Encephalitis Lived Experience - Rochelle's Story
Dr Rochelle Smith had to learn to read and speak again after falling ill with viral encephalitis in 2016. She would go on to graduate with a degree in medicine and a top award from the University of the West Indies
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Seronegative Autoimmune Encephalitis Lived Experience - Marleigh's Story
Marleigh was just three years old when she started showing symptoms of Seronegative Autoimmune Encephalitis. However it would take nearly a year, a brain injury and many life threatening status epilepticus seizures before this diagnosis was confirmed.
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Chikungunya Lived Experience - Parthasarathy's story told by his father, Venkatesh
Parthasarathy's story of chikungunya encephalitis told by his father, Venkatesh. Interviewed by Dr.Uddhav Kinhal from Indira Gandhi Institute of Child Health, Bangalore, India (video below). This was filmed to form part of Encephalitis International's 'Climate change, infectious diseases and encephalitis' Campaign 2025.
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West Nile Virus Encephalitis Lived Experience - Sue Ann
Sue Ann who was diagnosed with West Nile Virus encephalitis in 2023. In this special encephalitis podcast episode, she shares her lived experience story with our Chief Medical Writer, Prav.
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Japanese Encephalitis Lived Experience - Kelly's Story
Kelly, from Canada, shares her story of Japanese encephalitis which acquired while travelling. Her story formed part of the Encephalitis International Vaccine-preventable encephalitis awareness campaign in 2024.
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Anti-NMDAR Encephalitis Lived Experience - Megan's Story
It started with neurological symptoms such as difficulty processing information (forgetting song lyrics and inability to write emails) as well as visual symptoms (losing colours and pixelated vision) and paranoia. I also could not feel emotions or pain. After admission to the hospital, these symptoms worsened (inability to understand or process anything, couldn’t eat or use bathroom). Things then progressed to constant seizures.
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Anti-NMDAR Encephalitis Lived Experience - Tina's Story
Did you ever think it was possible that you could fall pregnant and then lose your mind? Lose your mind to the extent that even to this day I still don’t remember ever being pregnant, I don’t remember my pregnancy, my growing bump, my feelings or even going through the life changing experience of giving birth.
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Anti-NMDAR Encephalitis Lived Experience - Camila's Story (English and Spanish)
When I first learned about anti-NMDAR encephalitis, it felt like I was destined to become a diagnosis, as if my life had already been defined by a disease. But it wasn't until I began fighting it back it that my life truly began a whole new journey.
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Anti-NMDAR Encephalitis Lived Experience - Tom's Story
May of 2022 I once again got COVID-19 but this time was mild, or so I thought. Slowly my fatigue got much worse and my speech started to be hard. Processing was becoming harder and I was having headaches and crazy nightmares that I would wake up sweating, confused and scared. I was attending speech therapy and was a regular at my primary and neurologist. Everyone close to me could see me getting worse.
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Autoimmune Encephalitis Lived Experience - Bianca's Story
Out of fear, I wrote a letter to my daughter, who was almost 6 years old at the time. I wrote down everything she needs to know in order to be able to grow up self-loving and self-confident, in case I can't always be with her. My letter became a children's book. I have completely turned my life upside down. My everyday life is no longer the same (I often rest, divide the week differently and strengthen children in daycare centers and elementary schools.
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Anti-NMDAR Encephalitis Lived Experience - Tahla's Story
Tahla had autoimmune, Anti-NMDAR antibody encephalitis when she was 15. She spent 6 months in hospital, losing her ability to walk, talk, eat, drink, as well as experiencing psychosis and aggression.
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
UK in person event. Please join the Encephalitis International staff team and community at our Family Resilience Day Date: Saturday 13 September 2025 Aston University Students Union, Birmingham, UK This event is aimed at families whose child/young adult has been affected by encephalitis. We will be launching our new reviewed educational resources for primary and […]
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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