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Full Story Archive
This section is intended for use only on the main Stories page.
Autoimmune Encephalitis - Jonathan and Elle's Story
Jonathan, my husband of 21 years, passed away from health complications following a diagnosis of autoimmune encephalitis in 2024. How it started My story begins in February 2023 when my husband started acting strangely and the “essential tremor” in his hands seemed to spread to his legs. He’d been diagnosed with an essential tremor a […]
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Herpes Simplex Virus Encephalitis - Daniel's Story
Daniel sadly passed away after a few years from a diagnosis of Herpes Simplex Virus (HSV) encephalitis. This is his story told by daughter, Natalie. Symptoms and diagnosis In September 2022 my father was showing odd symptoms like confusion and flu-like symptoms. My mother took him to the hospital and after performing several testing […]
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Autoimmune Encephalitis - Elise's Story
In the last couple of days of our trip, I couldn't really understand what he was saying to me, and I just thought this was my hearing after having blocked sinuses, and because we were in a foreign country and not really talking to anyone else, I didn't know that it was actually everyone that I couldn't understand; not just him. All I wanted to do was rest and sleep, and I was getting very angry with myself that whatever was said to me had to be repeated multiple times. I remember watching kids films before bed and being very entertained by them, like a 4-year-old would be. I did not feel in my right mind.
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Autoimmune Encephalitis - Stuart's Story
When I was introduced to my partner (of 30 years) I initially had no clue of who they were. Over the next two weeks I was able to get to a point where I would return home and slowly try and put the bits of my life back together. Bit by bit and very slowly my world became a little larger than feeling calm, with a sense of not worrying about things I had forgotten and focusing on those things I had control over.
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Anti-NMDAR Autoimmune Encephalitis - Zoe's Story
Zoe was once a bubbly, playful little girl — full of laughter, curiosity, and light. Then, almost without warning, that light began to flicker. She stopped sleeping. She cried without reason. The words she had learned disappeared. The tiny feet that once ran freely could no longer carry her. The sparkle in her eyes slowly faded.
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Autoimmune Encephalitis - Keith's Story
My journey with Encephalitis began back in December 2024. I woke up in the middle of the night around 4am and started to go into a daze and felt out of it like I wasn’t right. I ended up making it to the bathroom and collapsing against the sink counter breaking 3 ribs and then […]
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Herpes Simplex Virus Encephalitis - Aurora's Story
Emma shares her story of daughter, Aurora’s, encephalitis diagnosis. Our daughter was born at 34 weeks premature. I had bleeding and premature rupture of my waters, hence her early birth. Before labour, I had steroids, so she was ready for a premature birth. To this point, there were no concerns. Although she was born 6 […]
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Anti-NMDAR Autoimmune Encephalitis - Emily's story
My story with anti-NMDAR encephalitis begins in the summer of 2024. I had been fortunate enough to travel with my mom and my sister to visit family in England, when I started coming down with flu-like symptoms. At first, I thought very little of it. The constant go-go-go pace and lack of sleep combined with […]
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Infectious Encephalitis - George's Story
In early November 2024, I became unwell with what appeared to be gastro like symptoms. My immune system began fighting the virus but, in doing so, accidentally shut my brain down, causing it to inflame. How it started I battled this at home for a week – high temperatures, extreme fatigue, confusion, and a […]
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Tick-borne encephalitis - Bill's story
Alarming symptoms hit me over a couple of days, a horror show of unbearable headache, fatigue, vision difficulties and loss of balance that put me in hospital where I had multiple intravenous drug infusions, blood tests, scans and a cerebro spinal fluid (CSF) sampling. I somehow failed to absorb the messages about potential outcomes and relaxed in the feeling the hospital staff were doing everything possible to sort me out. I credit this ignorance and confidence with why I didn't express the post-traumatic stress disorder (PTSD) that is not unusual after TBE hospitalisation. That's not to deny this is an emotional journey and I went to some dark places under my own steam.
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Enterovirus Encephalitis - Erin's Story
I had a seizure while in the coma which made things worse. My mum recalls the doctors saying I was "extremely unwell" which she knew from watching medic shows on TV was code for "it's not looking good". When I woke up from my coma I recall saying "where's my husband, I want my husband". No-one else was that important at that moment. I was incredibly distressed and confused. I couldn't move. Couldn't sit up or even roll over in bed. When my husband came and visited me he handed me phone which I immediately dropped and was convinced he'd filled my phone case with bricks.
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Rhombencephalitis - Elis' Story
Eventually, doctors agreed further tests were needed. He underwent an MRI scan, a lumbar puncture, and numerous other investigations. On February 23rd, we finally received the diagnosis: Rhombencephalitis - inflammation of the brain. By that point, our son was critically unwell. He slept almost continuously for three days and had lost both speech and mobility. We were faced with enormous uncertainty and fear, not knowing what the outcome would be.
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Herpes Simplex Virus Encephalitis - Lucy's Story
I sat down and got hit with a horrid sickly feeling right at the pit of my stomach. Everything hit so suddenly when I was in the shower. I felt incredibly dizzy, I tried to shout for help, but nothing came out. My grandad heard heavy, laboured breathing, it was me. My younger sister found me seizing on the shower floor, gasping for air as my right lung had collapsed because my head was directly under the shower head. An ambulance was called, and I was taken to hospital.
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Meningoencephalitis - Cade's Story
In June 2024, Cade fell suddenly and severely ill. He had shown no signs of being unwell until one day, out of nowhere, he started vomiting, developed a headache and fever, and quickly became confused and disoriented. His parents rushed him to hospital, where doctors soon diagnosed him with meningitis. But this was only the beginning.
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Autoimmune Encephalitis - Maria's Story
The next morning, I woke up with a fever. The only thing that brought it down was paracetamol. Without it, it was constant torment: my head felt like it was on fire, I couldn’t walk properly, I was staggering. I wasn’t eating, I was dehydrating. Only IV saline and intravenous paracetamol helped. The relief lasted only as long as the medication’s effect. After a few days, I was taken to the hospital by ambulance: extremely high fever, difficulty speaking, unstable walking. Yet, after the tests, I was sent home. My vital signs were normal. They told me it was probably a bacterial infection and prescribed antibiotics.
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Herpes Simplex Virus Encephalitis - Daniel's Story
In 2017, I was young, fit, and full of energy. I worked as a primary school teacher and performed on many stages as the singer of a reggae and ska band. Life felt wide open. I had no limitations, no serious illnesses, and creativity flowed easily—writing songs, playing piano, editing videos, building things. Everything seemed to be unfolding exactly as planned, with a lightness I still miss today.
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Autoimmune Anti-NMDAR Encephalitis - Ashley's Story
My battle with Anti-NMDAR encephalitis began in late June 2023, when I was 29. My memories from that time are blurry, something many people with this diagnosis can relate to. It started at work. I was unusually anxious about a presentation and hadn’t slept for nearly 48 hours. As the anxiety escalated over the next […]
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Acute Disseminated Encephalomyelitis (ADEM) - Vittoria's Story
Vittoria was diagnosed with Acute Disseminated Encephalomyelitis (ADEM) in Italy in 2011. On August 5, 2011, aged 42, I felt a sharp pain in my lower right back, but I didn’t worry about it because I thought it was premenstrual pain. On August 7, I suddenly fell for no reason and felt dizzy. On August […]
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VZV Encephalitis - Siw-Iren's Story - English Translation
I was taken directly to the emergency department. I remember being frightened—I understood that this was very serious. I knew I had been right all week! I had meningitis, but no one except my manual therapist had taken me seriously. In the medical notes from the emergency department, it states that I was very confused and restless. Clearly cognitively affected, with expressive aphasia. I remember wanting to call my son, and I tried to ask the person looking after me if they could get my phone from my jacket. All I managed to say was “there, there, there” while pointing at my jacket, repeating my son’s name. It was horrific being unable to speak while partly understanding the seriousness of the situation.
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VZV Encephalitis - Siw-Iren's Story - Norwegian version
Mitt navn er Siw-Iren Høgås, jeg er 50 år og har en sønn på 24. Jeg er utdannet sykepleier fra 1999. I oktober 2017 ble jeg rammet av varicella encephalitt. Har jobbet som leder ved ulike kommunale sykehjem i ca 15 år og vært assisterende avdelingsleder ved medisinsk avdeling i sykehus i 5 år. Jeg […]
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St Louis Encephalitis - Jennifer's Story
My encephalitis story begins in July of 2023, at the “end” of my cancer story. By the middle of August I was in complete remission from stage-four lymphoma, done with chemotherapy, and was informed that my immune system was functionally recovered from the chemo drugs. I doggedly focused on my recovery, gradually increasing my stamina, hiking, sailing, celebrating. I felt well enough to return to work, and even booked a show or two as a traveling folk singer and songwriter. Life was getting back to normal. Three months later, in the last week of October I came down with a sudden severe headache. My wife drove me to the hospital where I was examined and sent home with instructions to rest, and come back if things got worse.
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Autoimmune Encephalitis - Shiloh's Story
Before her illness, Shiloh loved driving, racing, fitness, nature, friends, and work. In 2022, her life changed dramatically as worsening symptoms including headaches, hallucinations, memory loss, seizures, and physical complications which led to a diagnosis of autoimmune encephalitis and a long, intensive hospital stay. Her recovery required ICU-level care at home and immense emotional, physical, and financial support from her family and community. Today, Shiloh continues to heal and has regained independence, with her family reflecting on the power of faith, resilience, love, and positivity throughout their ongoing journey.
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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).
Read StoryFull Event Archive
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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!
London Marathon
We have been unsuccessful in receiving a London marathon charity ballot place for 2027. The public ballot for 2027 is now open, you can apply for your own place here: Enter the ballot | London Marathon Events The London Marathon is one of the world’s biggest marathon, with 55,000 runners taking on the route […]
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