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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
Autoimmune Limbic Encephalitis Lived Experience - Karla's Story
English translation - It all started in September 2022. That year, I was going out partying a lot. For Mexican Night, I went out to dinner and celebrate with some friends. Around that time, my work schedule changed to the night shift, since I am a nurse. I clearly remember spending a lot of time worrying about how those shifts would go. When I started them, my mum and sister later told me that I had mentioned suffering from insomnia and nightmares.
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Autoimmune Encephalitis Lived Experience - Pol's Story
It started on a Sunday, during a family lunch, when Pol our active, healthy 7-year-old developed a high fever. At first, we thought it was just a virus. But within days, his behavior became alarming - extreme lethargy, emotional outbursts, and sensory issues especially with his back. Then came the insomnia, strange gazes, mumbling, and isolation. As a mental health professional, I knew something was very wrong.
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Tick-Borne Encephalitis Lived Experience - Dominic's Story
My symptoms followed swiftly: deep fatigue, intense headaches, and muscle pain. At the time, these were all brushed off as “exam stress.” But I knew something wasn’t right. That was the beginning of a decades-long battle against invisible illnesses—and worse, against disbelief from the medical system. As the years passed, my symptoms worsened. Migraines, irregular heart rhythms, and an unbearable sensitivity to light and sound took over my daily life. I sought medical help, but again and again, I was told it was “psychological.” I was made to feel like I was imagining it all.
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LGi1 Autoimmune Encephalitis Lived Experience - Pauline's Story
From nurse to patient - In this lived experience episode of The Encephalitis Podcast, Prav talks to Pauline – one of our wonderful Team Encephalitis volunteers. Pauline shares her own story of LGi1 autoimmune encephalitis, life as a nurse and about being a support volunteer for Team Encephalitis.
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Anti-NMDAR Autoimmune Encephalitis Lived Experience - Judiel's Story
Judiel Diaz, a nurse from the Philippines, shares her powerful journey of surviving anti-NMDAR autoimmune encephalitis. Misdiagnosed at first, she eventually received life-saving treatment during the height of the pandemic. From memory loss and hallucinations to regaining her identity and passing the US nursing exam, Judiel’s story is one of resilience, love, and hope.
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Anti-MOG Receptor Autoimmune Encephalitis - Theo's Story
That Tuesday morning, Theo walked into our bedroom with a slightly dazed look saying he felt sick and proceeded to lie on our bed. Within minutes, he had his first tonic clonic seizure. It continued for several frantic minutes while paramedics made their way to us. A few hours later we were let go from A&E saying that it’s not uncommon to have an unexplained afebrile seizure and many people never go on to have another.
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Human Herpes Virus-6 (HHV-6) Encephalitis Lived Experience - Sameer's Story
I was attending university, making new friends, and working part-time jobs to support myself. Life was moving forward beautifully. But then, everything changed. It started with a simple fever—nothing unusual, or so I thought. I expected to recover in a few days. But the fever didn’t go away. It worsened.
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Viral Encephalitis Lived Experience - Craig's Story
Craig shares his eight-month journey through illness and recovery of viral encephalitis. From the sudden onset of symptoms to life-threatening seizures, temporary blindness, and the emotions of recovery.
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CASPR2 Autoimmune Encephalitis Lived Experience - Subha’s Story
CASPR2 autoimmune encephalitis. What began with subtle symptoms like blurry vision and confusion quickly escalated into a terrifying medical crisis, leading to memory loss, personality changes, hallucinations, and neurological disorientation.
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Anti-NMDAR Encephalitis Lived Experience- Jenny's Story
Jenny shares her journey after being diagnosed with Anti-NMDAR Encephalitis What began as unexplained seizures and confusion was initially dismissed as anxiety, leading to a delayed diagnosis that turned her life upside down. Now involved in volunteer work and brain injury support groups, she uses her experience to help others with similar conditions.
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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
Read StoryFull Event Archive
This section is intended for use only on the main Events page.
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.
Family Resilience Day
Family Resilience Event 28-30 May 2026 Yorkshire Wildlife Park, Doncaster, UK This is an in-person only event aimed at children (up to 16-year-old) and their families who experienced encephalitis and its aftereffects. It is an opportunity for both children and parents to connect with each other and share experiences in a safe environment. Schedule […]
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!
My Brain & Medicine Birmingham, England 2026
My Brain & Medicine (MB&M) is an in-person event only. We would love you to join us in Birmingham, England on Friday 9 October 2026. This event is for anyone who wants to listen to the experiences of people who have been directly or indirectly affected by encephalitis and learn more about the after-effects. There […]
Encephalitis 2026 - Registration
7th and 8th December 2026 Royal College of Physicians (RCP), London and virtually (Please note the attendance is both in-person and virtual. Those who register will be able to watch the Conference sessions on demand for 60 days after the event) Registrations are now open! (in-person and virtual tickets are available) Book your tickets here […]
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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