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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
LGi1 Autoimmune Encephalitis - Graeme's Story
Graeme shares his lived experience of LGi1 autoimmune encephalitis. Graeme shares his experience of developing sudden, involuntary spasms in early 2022 that gradually worsened and disrupted his daily life. Despite repeated medical consultations, his symptoms were misdiagnosed or overlooked for nearly two years. The episodes, later identified as dystonic seizures, were triggered by stress, fatigue, and everyday activities.
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Herpes Simplex Virus Encephalitis - Adey's Story
What came next was a horror story and the experience of physical, mental and emotional torture. My symptoms intensified. Confusion, mental fog, extreme fatigue, severe headache, non stop cyclical vomiting, unbearable abdominal pain, my throat inflamed now unable to swallow my saliva without intense burning, and excruciating pain with touch that ran through my body like fire when sensory neurons/pathways were glitched (hyperesthesia/allodynia).
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Acute Disseminated Encephalomyelitis (ADEM) - Rosie's Story
Rosie shares her story of growing up after developing Acute Disseminated Encephalomyelitis (ADEM) at the age of six. After suddenly collapsing at school and spending time in intensive care, she faced significant physical challenges, particularly with balance, strength, and walking. Through rehabilitation, family support, and patient-centered care, Rosie gradually regained mobility and confidence.
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Mumps Encephalitis Lived Experience - Sandeep's Story
Sandeep shares his experience of surviving mumps encephalitis at the age of eight and the lifelong impact it has had on his health and wellbeing. After a sudden and severe illness that left him hospitalised, unable to speak or walk, Sandeep faced a long and difficult recovery marked by physical, cognitive, and emotional challenges.
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Autoimmune Encephalitis Associated with MOG Antibodies - Dara's Story
My symptoms began in late July of 2021 and I was hospitalized in September of 2021. I was initially misdiagnosed with “unspecified meningitis” because they could not pin down the exact cause, being that MOGAD is very rare. I was treated for bacterial, viral and fungal meningitis at the hospital. Luckily, part of that treatment was IV steroids, which likely saved my life. I was then sent home with oral steroids, antibiotics and anti-fungal medications. I laid in bed for months until I went blind.
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Herpes Simplex Encephalitis - Sanjay's Story
All was well, on 3rd August 2019, until it wasn’t. My father, out of the blue, started having a headache in the evening. He got checked from his aunt (who is a doctor), and she suggested that we take him to the hospital in our hometown, Udaipur (India), as he had started stuttering. Upon reaching the hospital, his brain’s MRI was conducted and my father was admitted in the ICU. Over the course of the next few days, my father’s health deteriorated. He felt feverish, started drooling and passed urine.
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Measles Encephalitis - Renee's Story
I collapsed. I had fallen into a coma. I was rushed to the hospital by ambulance and the doctor told my mother that I would most likely be a vegetable for the rest of my life. If I survived at all. There I was lying on a trolley in a coma but I saw everything. The next thing I remember was being moved through a long hall into a dark room with two nurses and a surgeon looming over me sticking a needle into my lower spine. Still in a coma. I travelled through a long tunnel at the end of which was a bright light and then back again as one of the nurses stroked my hair.
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Acute Disseminated Encephalomyelitis (ADEM) - Anji's Story
I awoke and intermittently struggled to move my right leg and had to really think about how to swallow, kind of like when you have tonsillitis and you are preparing for the razor blade feeling. I was staying with friends who thought I was having a stroke and took me to hospital for assessment. Things continued to deteriorate as the day went on and early hours of the morning I could no longer walk, talk, or move my right arm. Panic set in. Then I remember being transferred to another hospital by ambulance at approximately 2am. I was in and out of consciousness but remember the ambulance man asking me questions and I remember thinking why? I can't answer you so just stop! When I got to the hospital my consultant was there waiting. From here I remember very little for the best part of a week while they ran every test known to man twice! Every day the consultant would assess me to see if I needed a high dependency unit.
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Herpes Simplex Virus Encephalitis - Axyl's Story
After another 24 hours with no signs of progress and his fever climbing beyond what ibuprofen and Tylenol could manage, we rushed him to the emergency room. There, he was diagnosed with rhinovirus and sent home with instructions to let the virus run its course. We were told that fevers could last up to 10 days, but deep down, something felt terribly wrong. As the days passed, Axyl lost nearly 10 pounds in just 12 days, and his condition grew increasingly alarming. He refused to eat, became extremely malnourished, and started hallucinating. My once energetic boy was now having staring spells, violent outbursts, and calling his brother “Mom.” His behavior was completely out of character.
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Autoimmune Encephalitis Lived Experience - A mother's story
On arrival he was quickly admitted with suspected meningitis and started on IV antibiotics. The next couple of days were a bit of a blur. He tested positive for Strep A and a virus, so was also started on antivirals too. His lumbar puncture was thankfully negative for meningitis so we were hopeful it was just a couple of nasty bugs which had wiped him out and he would start to improve. And in many ways, he did seem to improve, he was less agitated and even trying to eat, but at the same time he was growing weaker, he lost control of his bladder, and we couldn't get him to talk.
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Acute Disseminated Encephalomyelitis (ADEM) - Madison's Story
I started having dizziness, headaches and blurry vision but I was dismissed as being fine. I began getting paranoid and hallucinating. I was typing messages that were just scribbled letters. Within the next couple of days, I was alone in a house, dog sitting. I fell asleep and slept passed my alarm but eventually woke up and felt even more confused. Nothing that was familiar looked familiar and nothing made sense. I had to meet my mom somewhere, so I got in the driver’s seat forgetting my phone. The car looked like it made no sense. I remember being confused in the driveway about the gears and about how to drive, but somehow, I did it although I don’t remember much of the drive.
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Herpes Simplex Virus Encephalitis - Laura and Levi's Story
We were told that Levi was experiencing the new Covid-19 strain symptoms. We were sent away with paracetamol and told to come back the following day for a lumbar puncture but Levi didn't want to go back to the hospital the following day. His symptoms continued for a couple of more days. I remember him sleeping in bed, occasionally vomiting, not keeping anything down. One particular night, around 1am, he jumped up out of bed, he ran over to the wardrobe doors and flung them all open. He was grabbing at thin air, behaving erratically and bizarrely. I was terrified and had no idea what was going on. I immediately dialled 999 and explained that he appeared to be hallucinating, he was behaving really strangely. I had never been so scared in all of my life.
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Bickerstaff Brainstem Encephalitis - Rebecca's Story
I spent the next day in bed, barely able to walk without intense feelings of vertigo - my vision was blurred, balance was off, and I felt incredibly nauseous. I was wheeled off to the hospital in an ambulance at around 1 am and can remember lying in hospital very scared and ill, with lots of beeping and voices all around me. My vision seemed to fade at one point, and after that, everything is entirely blank. My only rather frustrating memory is being told to ‘walk it off’; luckily, my family were able to flag down a lovely nurse who saw how ill I was before taking me to the ICU. There was much worry about a tropical disease causing my symptoms, hence the speed of my admission to the intensive care unit.
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Autoimmune Encephalitis Lived Experience - Philippa's Story
It was terrifying. The uncertainty, the not knowing what each day would bring, was one of the hardest parts. He spent six long months in hospital, followed by a further eight months in a rehabilitation centre. Those fourteen months were filled with fear, exhaustion, hope, and small victories that meant the world to us. Our story is still continuing and if I’m honest, it’s been nothing short of a rollercoaster.
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Autoimmune Encephalitis - Anti-NMDAR - Alex's Story
I received a call from Alex complaining that she had something buzzing in her ear and that it is making her uncomfortable. On the same day in the afternoon, I received a call from my sister telling me that Alex had collapsed and she was brought to the nearest hospital. When she woke up, the hospital staff, without proper diagnosis, wrongly accused her of taking prohibited drugs just because she was shouting, hallucinating and was very disoriented.
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Infectious Encephalitis Lived Experience - Ava's Story
In July 2024 we had returned from a family holiday. Ava, at the time, was 4 months old and we'd noticed that she had been irritable, had developed sores near her mouth (later identified as the Herpes Simplex Virus type 1) and one day suffered a 20 minute focal seizure.
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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.
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 […]
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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