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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
Autoimmune Encephalitis Lived Experience - Freya's Story
Freya talks about her lived experience of autoimmune encephalitis which she was diagnosed with when she was 25. She later went on to have further seizures. She shares her story of diagnosis, recovery and relapse here.
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ADEM Lived Experience - Erin's Story as told by mum, Michelle
Michelle shares her story her daughter's diagnosis of acute disseminated encephalomyelitis (ADEM) and cerebellitis secondary to influenza A virus. Five year old Erin and her brother both had flu like symptoms. Unfortunately, they became far worse for Erin.
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Viral Encephalitis Lived Experience - Elissa's Story
Elissa shares the importance of sleep, mental health and her family and friends in her ongoing recovery from viral encephalitis. Diagnosed in 2019, Elissa talks about the struggle she went though in hospital and the relapses she has experienced.
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Autoimmune Encephalitis Lived Experience - Elisabeth's Story
Elisabeth shares her experience of being diagnosed with autoimmune encephalitis. The confusion it caused and how and how she spent Christmas, New Year and her 20th birthday in hospital.
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Autoimmune Encephalitis Dave's Story - Part Two
Part 2, February 2018 (aged 68): An update on my progress after I fell ill with autoimmune encephalitis in January 2016. General I feel that I have come a long way since my illness in January 2016 and I am sure my family and friends would agree on this. Some days I feel 100%, […]
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Autoimmune Encephalitis Dave's Story - Part One
Part 1: January 2016 (aged 66) I have no recollection whatsoever of the initial stages of contracting encephalitis, nor the early stages of my diagnosis and treatment. Therefore, the first part of ‘my story’ has been compiled from the experiences of my family and friends, together with my medical team. The first sign that there […]
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Herpes Simplex Encephalitis Lived Experience - Corinna's Story
The HSV encephalitis had caused the amygdala to dysfunction, sending me on an unpredictable emotional rollercoaster ride. When I first arrived at the emergency department, doctors couldn’t find a clear cause to my symptoms of feeling disoriented, dizzy, nauseous and suffering a severe headache.
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ADEM Lived Experience - Charlie's Story
However, on the morning of the 6th February, he woke at 4am, told us he felt sick and rushed to the toilet and immediately vomited. He felt hot to the touch and his temperature was over 40. This is a high temperature, but we were used to Charlie having fevers as he had suffered from recurring tonsillitis for six years before they were finally removed in July 2018.
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Viral Encephalitis Lived Experience - Paula's Story
This is Paula's Viral Encephalitis Lived Experience. She discusses how encephalitis affected her childhood and how she is doing now.
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Anti-NMDAR Encephalitis Lived Experience - Ger's Story
Ger tells the story of his three experiences with Anti-NMDAR encephalitis and how it affected the course of his life.
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Herpes Simplex Virus Encephalitis Lived Experience - Audrey's Story
Audrey discusses herpes simplex virus encephalitis lived experience, including the early signs of her illness and long term effects encephalitis has had on her life after being diagnosed at age 58.
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Anti-NMDAR - Cerys' Story told by mum, Kerry
We called an ambulance and she was fully recovered by the time they arrived with no recollection of what had happened. She was taken to A&E where a CAT scan and observations all came back clear. They even considered sending her home because she was alert and well. She was only kept in because I mentioned the changes in her over the past week or so.
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Herpes Simplex Encephalitis Lived Experience - Bruno's Story
My encephalitis started suddenly from one day to the next. I was 16 at the time, and I was half way through my lunch hour when it happened. All of a sudden and without any warning, I felt very dizzy and lost all sense of balance. I spent a good deal of the afternoon with friends in the school library sitting down not being able to move much.
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Herpes Simplex Encephalitis Lived Experience - Brie's Story
In November 2019 I started to feel run down. Initial diagnosis was an ear infection. However, after a week of antibiotics and steroids I wasn’t any better. I was lethargic, sleeping for hours of the day. I began to become unsteady on my feet. The GP added in another antibiotic and some more steroid ear drops. He still felt it was a bad ear infection and advised me to continue.
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Measles Encephalitis Lived Experience - Barbara's Story
Although I feel that my life has been affected by many events, even small ones, one specific event had a major effect on the direction my life took at the time. This event occurred when I came down with measles encephalitis at the age of six.
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VZV Meningoencephalitis Encephalitis Lived Experience - Annette's Story
When I developed the mother of all headaches, it was not surprising that I was discharged from A&E after a night of observation, with the diagnosis of a tension headache. They had done a CT scan and a chest X-ray but results were normal. However, they had not really taken into account the fact that I was confused, light-sensitive and vomiting. I had lost my appetite and found drinking water difficult as everything tasted revolting and made me feel even worse
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Anti-NMDAR Encephalitis Lived Experience - Ana's Story
Ana was a happy 10-year-old just finishing the 4th grade when she came down with flu-like symptoms. Terri (Ana's mom) describes Ana's Anti-NMDAR encephalitis lived experience.
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Encephalitis Lived Experience - Anais' Story
I was 15, going into 4th year, and it was September so at this point school had been in commencement for about 2 weeks. The first sign of encephalitis, I only realised AFTER the entire ordeal. I was in class and suddenly I felt my body go still - I felt a wave of nausea hit me full force, my hands were shaking and I couldn’t move. I remember thinking “I need to leave, what is happening?” but I couldn’t speak - it was like I had gone catatonic.
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Encephalitis Lived Experience - Amy's Story
I was finally given a diagnosis and treatment was commenced. I was sent for a PET scan to check for tumours/cancer which thankfully came back normal. I had a central-line inserted, and I was administered several rounds of high dose steroids, and started on monthly cycles of plasmapheresis as an out-patient. I am on monthly intravenous immunoglobulin, and immune-suppressing tablets which I take daily. I've also had Rituximab infusions.
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Measles Encephalitis Lived Experience - Zanna's Story
It's a shock to be this ill. It changes your perception, your place in your own life, your relationship to others. Perhaps you feel cast adrift by the virus whose greatest threat is past; you’ve survived; but you feel physically and emotionally exhausted. You may not be able to get up or down stairs. You may not be able to get out of bed at all.
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Viral Encephalitis Lived Experience- Betzabé's Story
Although we -as Betzabé’s family- knew that she was not able to live the life that she lived before the brain injury, we were still fighting very hard to help her to build a worthwhile new life within her capabilities. We hoped that she could recover at least and have the independence as a person to look after herself and her youngest son.
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A letter from your brain
A Letter From Your Brain by Stephanie St. Claire may help you understand what happens with your brain after encephalitis.
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Anti-NMDAR Encephalitis Lived Experience - Hannah W's story
On September 4th, I was initially admitted to a psych ward. I was diagnosed with Bipolar Disorder Type 1 with psychotic features and mania. After no improvement was observed, I was admitted to another hospital on the 15th as it was suspected my condition was not psychiatric, but medical. After several weeks of assessments, tests, and procedures, I was diagnosed with Anti-NMDA Receptor Encephalitis a rare auto-immune disorder where antibodies attacked the receptors of my brain.
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Herpes Simplex Encephalitis Lived Experience - Aurelio's story
My father was diagnosed with HSV-1 Encephalitis in October 2020. My father is what you would call a stand-up guy, the life of the party, a heart of gold-type person. He fills every room he walks into with love, joy, and happiness so naturally this incident heavily affected all our lives: friends, family, and everyone around us.
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 […]
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!
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.
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.
Seizures and encephalitis FREE webinar - patient event
Please note that this is an event aimed at patients. Programme 2.00pm (GMT) – seizures and encephalitis in adults 2.45pm (GMT) – seizures and encephalitis in children Each presentation will finish with a Q&A session. Speakers to be announced soon. There will be an opportunity for delegates to connect with others by joining a separate […]
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!
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.
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 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!
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!
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.
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?
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!
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.
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