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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 […]

9 October 2026

The Old Library, Zellig, Gibb St, Birmingham B9 4AT

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Seizures and Encephalitis Webinar 2026

Seizures and Encephalitis Webinar is a virtual event for patients and caregivers worldwide. We would love you to join our fee webinar on Thursday 12th November 2026. This webinar is for patients and caregivers only. It aims to provide more information about seizures and encephalitis (infectious and autoimmune) in adults. Programme 15:00 – 15:45 […]

12 November 2026

Virtual

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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 […]

7 - 8 December 2026

Hybrid

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Full Story Archive

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Encephalitis unknown - Laurie's Story

A childhood illness led to encephalitis, seizures, and a long journey toward being believed and properly diagnosed. Becoming seriously ill as a baby I was diagnosed with encephalitis at 10 months old after becoming seriously ill in 1958. I do not know whether my parents were ever told the exact type, but it followed influenza […]

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Influenza encephalitis - L's Story

Our little son, L, passed away suddenly from influenza encephalitis. This story includes details of surgery and bereavment of a young child. L had always been exceptionally healthy and robust. In the past, when he had an infection, he had always had a very short period of sickness and quickly regained his strength in no […]

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A woman with blond hair smiles at the camera.

Autoimmune Unknown Encephalitis - Alexandra's Story

After encephalitis left me fighting to recover from ICU, I had to relearn everyday tasks and rebuild my confidence, discovering a changed outlook on life along the way. Life before encephalitis Before everything changed, I was a bubbly outgoing person who loved my job, holidays and family and friends get togethers. I would always go […]

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Herpes Simplex Virus Encephalitis - Phillip's story

I’m Phil, I’m 74 and I have always been athletic. Here is my story of encephalitis. I went to the Wind River area of Wyoming to hike with my friend in the mountains in 2025. Elevation 7,000 feet. The 3rd day after hiking, and while sleeping at 4:30am I went into my first ever seizure […]

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Varicella Zoster Virus (VZV) Encephalitis - Inga's Story

I suffered from shingles in October 2025 for about 15 days before things got worse. The shingles were getting dry, some scars on my right costal arch. On November 6, in the afternoon, I was laying on the sofa in my flat. I was agitated, but I did not know why. There was no reason […]

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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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Full Event Archive

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