Your Stories
Your Stories
Here, our members and volunteers share their stories and experiences of encephalitis.
If you are in any way affected by these stories please do get in touch with our support team.
Many of the stories and videos below were filmed as part of the My Brain and Me project which is proudly supported by the National Lottery Community Fund. The videos can also be viewed on our YouTube channel.
Share your story
If you would like to share your own story, please visit our Submit Your Story page.
These stories are incredibly valuable for others to read. They can help people, directly or indirectly affected, to understand more about encephalitis and deal feelings such as loneliness and isolation.
We usually ask for written stories with sub-headings relating to things such as diagnosis, treatment and ongoing recovery.
We ask that you do not name individuals or medical centers without their consent. Please use generic terms such as friend, parent or doctor.
If you have any questions please do get in touch.
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.
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Anti-NMDAR Encephalitis Lived Experience — Abi's Story
Abi is a professional international rugby player for England and Great Britain 7s; competing in the 2021 and 2024 Olympics. In June 2022, she had her first seizure. She was misdiagnosed which led to being sectioned. She was then diagnosed with Anti-NMDAR encephalitis in July 2022. Abi talks about her experience of encephalitis at the My Brain My Story event in 2023.
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Anti-NMDAR Encephalitis Lived Experience — Judiel's Story
Judiel was a nurse when she was diagnosed with encephalitis at the aged of 25 in 2021. She tells her story as part of the Encephalitis International My Brain and Medicine event 2024.
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Herpes Simplex Encephalitis Lived Experience — Steven's story
Steven shares his experience of herpes simplex virus (HSV) encephalitis In March of 2023 at the age of 35, I became sick. At first, I thought it was nothing, just a flu or stomach bug; nothing to worry about. After about 3 straight days of the worst headache of my life, aches and a temperature, […]
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Unknown Cause Encephalitis Lived Experience — Hatice's story
Hatice shares her experience of unknown cause encephalitis My name is Hatice, I am 29 years old and I live in Turkey. I want to tell you my story. in July 2021, I caught the COVID-19 for which I took immunosuppressive medications. These drugs were later removed. I recovered within 2 weeks and there were […]
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Herpes Simplex Encephalitis Lived experience — Elizabeth H's story
Elizabeth shares her experience of herpes simplex virus encephalitis Before encephalitis I’m a 62-year-old woman living in Colorado and have always pursued endurance sports: I was a competitive swimmer for 10 years, specializing in one and two-mile open water events before college. I’ve run 11 marathons, including five Boston marathons and four New York City […]
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Herpes Simplex Virus Encephalitis Lived Experience — Jennifer's story
Jennifer shares her experience of herpes simplex virus (HSV) 1 encephalitis My brain before and after encephalitis I noticed during my research of the brain that it is not typical for people to share their medical history, and I never thought I would be in this position. However, the diagnoses I had are interesting and […]
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Anti-NMDAR Autoimmune Encephalitis Lived Experience — Rachael M's Story
I don’t remember anything from my admission until fuzzy memories of my time in inpatient rehab. By the time I reached the hospital I was catatonic, and seizures were starting to take over, free fall which lasted for days, weeks, eventually resulting with me being placed on life support for months.
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Influenza Encephalitis Lived Experience — Audrey B's Story
By the next morning Audrey’s lethargy and vomiting continued and progressed to where she was completely obtunded, nonverbal and with rapid eye movements mimicking seizures. We were rushed back to the ER via ambulance where she received a full work up (CT, lumbar puncture, EEG, MRI, etc). She was diagnosed with influenza B encephalitis.
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Anti-LGi1 Autoimmune Encephalitis Lived Experience — Juliette's Story
These moments of "disconnect" were characterized by a temporary sensation of leaving my body, accompanied by an electric shock to the head and a metallic taste in the mouth, similar to episodes of "trances" lasting about 10 to 15 seconds. Initially, these episodes occurred when I was alone, and I didn't talk to anyone about them.
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Herpes Simplex Virus Encephalitis Lived Experience — Tim's Story
One day in May 2014, I woke up with a high fever (103+), and a severe headache that wouldn’t go away. This was odd because I was never sick before. I was 48 and in the best shape of my life at the time, as a personal trainer, a P90X Xtreme finisher, a soccer coach, and new to the obstacle racing sport. I was extremely active as a parent and husband and never stopped moving.
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Anti-LGi1 Autoimmune Encephalitis Lived Experience — Gill's Story
In June 2023, our mum began complaining of dizziness/light-headedness that would wash over her throughout the day. During these spells, Mum was unable to speak, and she described it as a scared feeling in the pit of her stomach.
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Herpes Simplex Virus Encephalitis Lived Experience — Lucy's Story
Lucy, from London, began experiencing flu-like symptoms in the spring of 2006. Within weeks, she was hospitalised and had a number of seizures on the day she was admitted.
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