Your Stories
Your Stories
Here, our members and volunteers share stories and experiences of encephalitis.
If you are in any way affected by these stories please do get in touch with our support team on support@encephalitis.info or call +44(0)1653 699599.
If you would like to share your own story please visit our Share Your Story (www.encephalitis.info/submit-your-story) page.
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 be viewed on our You Tube channel @encephalitisinternational
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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Henry: Bereavement from encephalitis shared by parents, Louise and Richard
Henry's parents, Louise and Richard, share the trauma they encountered when Henry died. Henry spent one week in hospital after his parents recognised that something wasn't right with him. After many tests and eventually surgery, Henry sadly passed away a few days before his 9th birthday.
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Autoimmune Encephalitis - Dougie's story told by wife, Gail
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 28 travelling in Scotland, talks about his lived experience here. He had fever like symptoms when he realised 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 NMDA 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 B story
In March of 2023 at the age of 35, I had become 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, temperature, I was starting to worry but not to the point of […]
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Unknown Cause Encephalitis lived experience - Hatice's story
Hello, My name is Hatice. I am 29 years old, and I am living in Turkey. I want to tell you about my own story. I caught the covid virus in July 2021 for which I took immunosuppressive medications. These drugs were removed in later periods. I recovered within 2 weeks and there was […]
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Herpes Simplex Encephalitis lived experience - Elizabeth H's story
I’m a 62-year-old female resident of Colorado. I have always pursued endurance sports: I was a competitive swimmer for 10 years specializing in the one mile and two-mile open water events before college. I’ve run 11 marathons including five Boston marathons and four New York City (NYC) marathons. I have also done Ride the Rockies […]
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Herpes Simplex Encephalitis Lived Experience - Jennifer's story
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 never did I think I would be in this position. However, the diagnoses I had are interesting and a little rarer than the ordinary. HSV1 Encephalitis is rare […]
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Anti-NMDAR 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 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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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 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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Meningoencephalitis Lived Experience - Kevin's Story
In 2019, Kevin was working as a Proctor when he became ill with meningoencephalitis. The illness left Kevin with anxiety, a number of physical symptoms, while noisy environments mean his brain can easily become overwhelmed. These encephalitis after-effects would eventually lead to his retirement with long-term disability in 2022.
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Autoimmune Encephalitis Lived Experience - Tony's Story
I came home from work, had a fever for a couple of days, started having convulsions (glad I don’t remember biting my tongue) and was taken into hospital (having punched a paramedic on the way there!). From that point it was really a case of my family insisting that things were worse than what the experts thought until they finally managed to get me in front of the expert who realised how bad it was.
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Herpes Simplex Virus Encephalitis Lived Experience - Yvonne's Story
This is Yvonne's lived experience of Herpes Simplex Virus Encephalitis, including what she struggled most with and how she dealt with those issues.
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Varicella Zoster Virus (VZV) Lived Experience - Shawn's Story
I could feel myself growing tired—quickly. I was “fading fast”. Everything went black, and then the next thing I knew, I could only see plaid. I could also hear sounds, but none of them made sense to me. As I reflect back on that moment, I think it was that time after a seizure when someone is confused. I could see and hear, but could not understand any of it.
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Herpes Simplex Encephalitis Lived Experience - Ross' Story
During the first six months of recovery my physical well-being was shot, and my mental state was crazy. I slept a lot and I had no memory at all of the six weeks I spent in hospital, let alone prior to the episode. My memory is still real patchy - past and present! But I don’t get depressed about it, I just laugh at myself.
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Autoimmune Encephalitis Lived Experience - Richard's Story
Richard, who was affected in his 20s, talks about life following encephalitis. He shares his experiences of the after-effects of his encephalitis, his interest in mindfulness, and living in the present.
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