Your Stories
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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.
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.
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. Funding has also been provided by GSK towards developing our My Brain and Me project. The videos can also be viewed on our YouTube channel.
If you have any questions please do get in touch.
Acute Disseminated Encephalomyelitis (ADEM) - Alisa's story
It all started as a normal Thanksgiving Day, sitting around a bonfire with our family. The next day, everything changed. The day before her symptoms began, my daughter was completely fine – dancing, talking, and her usual happy self. Then, suddenly, she woke up crying with a severe headache that no medication could relieve. Soon […]
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Autoimmune unknown - Roger's story shared by his family
Roger’s family share their father’s story of heart surgery and encephalitis before he sadly passed away. Before everything changed Many of the males in Dad’s family died before retirement from heart conditions, and Dad fully expected the same. He had retired from a distinguished career in the Metropolitan Police, did other work after that, and […]
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Acute Disseminated Encephalomyelitis (ADEM) - Beth's Story
In October 2025, after experiencing symptoms similar to COVID-19, I was taken to hospital by emergency services. I had been suffering from persistent headaches, a loss of taste and smell, and a gradual loss of mobility. My condition continued to deteriorate in the emergency room in hospital, where I experienced what I now understand to […]
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Meningoencephalitis - Kelly's Story about Mum, Karen
My mom, Karen, had what we assumed was the flu. She felt miserable, but nothing about it seemed beyond ordinary. That’s the thing about serious illness: it rarely announces itself. I was 24, recently out of college and back living with my parents. The day before she was admitted to the hospital, we had one […]
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Encephalitis Unknown - Amjad's Story
Amjad started with symptoms which led him to being treated for encephalitis. Here he shares his story. Before Everything Changed A little more than five years ago, I was on top of the world: 35 years old, married to the woman of my dreams, proud father of a two-month-old son, working at a company […]
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Anti-NMDAR autoimmune encephalitis - Amber's Story
Juana tells the story of her niece’s experience of Anti-NMDAR autoimmune encephalitis Amber’s Early Symptoms Amber, my niece, is 13 years old and living in the Philippines. She is an athlete, a badminton player of her school, and was due to be part of a big competition representing our province in March. But unfortunately, this […]
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Autoimmun-MOG-Enzephalitis – Angelos Geschichte (deutsche Version)
Leider hatte meine Familie auch eine sehr schwere, fast tötliche Erfahrung. Unser Sohn Angelo war 14 Jahre alt, als er schwer krank wurde. Das ganze begann Mitte August 2025, als er starke Kopfschmerzen und hohes Fieber bekam. Er beklagte wiederhold Doppelbilder und ein Flackern vor den Augen.Sein rechtes tat zudem weh, wenn er es bewegte. […]
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Autoimmune MOG Encephalitis - Angelo's Story (English translation)
Unfortunately, my family also had a very difficult, almost fatal experience. Our son, Angelo, was 14 years old when he became very ill. It started in mid-August 2025 with very strong headaches and high fevers. Angelo repeatedly complained about having double vision and a flickering in front of his eyes. His right eye hurt when […]
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LGi1 autoimmune encephalitis - Marion's Story
Our mum Marion was an independent, active and busy 82-year-old. Sadly, she passed away following seizures from LGi1 encephalitis. Early symptoms Over the weekend of the 15th to 16th July 2023 mum became unwell with flu-like symptoms. By the Tuesday (18th) mum became very confused, disoriented and unwell. First hospital admission An ambulance was called […]
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Anti-NMDAR Autoimmune Encephalitis - Andrew's Story
It all started early 2026 with flu-like symptoms: heart racing, night sweats, the chills and trouble sleeping. But no congestion or cough. I also felt really off mentally. A deep sort of anxiety, along with panic attacks, that I had never experienced before in my 38 years of life. It was terrifying, especially because I had no idea what was causing it. There were no life events or obvious triggers that precipitated the psychological symptoms, nor was there any obvious biological explanation for the physical symptoms at the time. This was only the beginning.
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Autoimmune Encephalitis - Lara's Story
I was diagnosed with autoimmune encephalitis in August 2015 when I was 17. What happened at school I was with my classmates studying for a quiz. We were in a garden in campus and I collapsed, head-first in the concrete and I was seizing. My classmates brought me to the clinic, and I was monitored […]
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Powassan Virus Encephalitis - Kathleen's story
On July 20, 2022, I was in the best shape of my life. My friend captured a photo of me on horseback, with a big smile on my face. The next day I went to the beach, but had a headache, and no appetite, a rare occurrence for me. The morning of July 22, and […]
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Varicella-Zoster Virus (VZV) Encephalitis - Dita's Story
I was diagnosed with Varicella-Zoster Virus (VZV) Meningoencephalitis on the 4th of September 2025. Early symptoms My story begins one week prior the hospitalisation. Day 1-3 I felt mild headache and dizziness that I was able to control with painkillers. On the day 3 retuning from work I noticed red rash all over my upper […]
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Viral encephalitis - Adrien's Story
There Is Life After Encephalitis: My Journey of Adaptation and Independence I was six years old when I became seriously ill in 1974/75. My family were initially told I had glandular fever, although later medical records from the hospital referred to a post-infectious viral encephalitis, possibly associated with mumps. I became critically ill and spent […]
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Viral Encephalitis - Sharmila's Story
My experience of encephalitis showed me not only how suddenly serious illness can strike, but also how deeply it can affect every stage of life long after the initial crisis has passed. I contracted encephalitis, a viral brain fever, in June 1970 when I was five years old. Before that day I was an ordinary […]
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Meningoencephalitis - Tiffany's Story
One moment really shocked me. I looked in the bathroom mirror and jumped because I didn’t recognise my own reflection. I touched the mirror to check it was real. Before I became ill My name is Tiff, and I was in my early 20s when I became ill with meningitis and autoimmune encephalitis in 2018. […]
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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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