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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 - 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.
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HSV Encephalitis Live Experience - Amanda's Story
The first couple of months at home were a period of extreme tiredness and I slept many hours at night and also had a great deal of rest time during the day. One of the difficulties besides memory was my loss of language, even English. I have learned many words again but have not been brave enough to start my foreign language classes. The difficulty speaking was obvious when I was taken down to visit my colleagues at my workplace. I found it very difficult to speak clearly and remember many everyday spoken words.
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HSV Encephalitis Lived Experience - Chris' Story
I was rushed into hospital in May 2021 after losing consciousness and spent 2 days in intensive care. The hospital struggled to identify the problem, misdiagnosing my condition twice. I was eventually diagnosed with HSV encephalitis on day 10 of my admission. Following treatment I was discharged after 5 weeks with limited knowledge of what had happened to me or what to expect and almost no support. It’s been a long and often traumatic 3 years since. However, I am now pleased to say that I have made a good recovery and have minimal physical residual symptoms.
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Meningoencephalitis Lived Experience - Amy's Story
The following weeks were a blur for me and were incredibly stressful for my family and my husband as doctors struggled to put a label on what was happening to me. Various diagnoses were ruled out and meningoencephalitis was eventually established. Eventually a specialist MRI interpretation diagnosed listeriosis and it was suggested that having a low immune system postpartum may have contributed to the severity of my illness. During this time I was in and out of consciousness, I suffered tremors, headaches, hallucinations and incredibly vivid dreams.
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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.
Read StoryFull Event Archive
This section is intended for use only on the main Events page.
Prague Half Marathon
The Prague Half Marathon is an unforgettable race due to its stunning scenery, with landmarks including Prague Castle, the National Theatre, Vyšehrad Castle and the Rudolfinum Concert Hall. It is one of the races in the popular SuperHalfs Series.
Milano Marathon
The Wizz Air Milano Marathon offers an amazing flat route for those looking to run from the Piazza del Duomo, through the extraordinary architecture of Milan. It's the perfect setting for a personal best too - known as the fastest marathon in Italy.
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.
Big Sur International Marathon
Big Sur International Marathon is a point-to-point course run on scenic CA Highway 1 from Big Sur to Carmel in California. Towering redwoods, crashing waves, coastal mountains and verdant pastures are featured on this bucket list course.
My Brain & Medicine 2025
My Brain & Medicine 2025 – Registration is now open (virtual event) Join us online for a patient event where we will be joined by a host of professional and lived experience speakers. The presentations are aimed at patients, carers and family members with an interest with encephalitis. Starting on Monday, April 28, 2025 at 1:00PM […]
Climate change, infectious diseases and encephalitis FREE webinar - Health professional event (online)
Registration is now OPEN! If you are a health professional please join us on the 29 April 2025, at 2pm (BST) to find out more about the impact of climate change on infectious diseases and encephalitis. If you are not able to join ‘live’, please register and a link to the recordings will be sent […]
Edinburgh Marathon Festival
The Edinburgh Marathon Festival offers a varied programme of events - 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. 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.
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
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
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
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
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.
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!
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.
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.
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!
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!
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?
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.
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!
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