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 Haemorrhagic Leukoencephalitis (AHLE) - Ibrahim's Story
Ibrahim’s Story: Raising Awareness of Acute Haemorrhagic Leukoencephalitis (AHLE) told by his family Reader warning – Ibrahim passed away within six weeks of first becoming unwell. If you wish to speak to someone after reading this story please contact our helpline. About Ibrahim Ibrahim is a young father, son, brother and provider whose life changed […]
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Viral Encephalitis - Gill's Story
A childhood illness led to lasting challenges, resilience and a life shaped by determination. Becoming ill I was 13 and went on a school trip to a youth hostel in 1974. I felt pretty rough while we were there. They said I had food poisoning. When I came home, it was my confirmation day. I […]
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Acute Disseminated Encephalomyelitis (ADEM) - Nicola's story
After developing ADEM at the age of nine, Nicola’s story reflects on the long-term impact of encephalitis, including memory loss, fatigue, confidence, invisible disabilities and the ongoing nature of recovery. Before I became unwell When I was nine years old, my life changed in a way I could never have imagined. Before encephalitis, I was […]
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Autoimmune Unknown Encephalitis - Guilherme's Story
My name is Guilherme, a military service member in the Brazilian Navy since 2000 The Onset of Symptoms On an ordinary workday during an on-call shift, I began experiencing severe headaches, loss of speech, numbness throughout my body, and loss of movement in my arms. Suspecting a stroke, they rushed me to the hospital by […]
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Herpes Simplex Virus Encephalitis - David's Story
A sudden illness, a life-changing diagnosis, and the long road after encephalitis The first signs It was a lovely sunny day in June 2018. My husband, David, woke with a headache and decided to go back to bed (very unlike him) He woke up and said we should go into town, he did say he […]
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Anti-NMDAR Autoimmune Encephalitis - Evie's Story
Evie shares her story of recovery, resilience, and finding hope after Anti-NMDA receptor encephalitis When everything changed Ten years ago, after initially becoming ill with what seemed like the flu, my life changed completely. I began experiencing severe personality changes, including paranoia, before suffering seizures that led to me being placed into a 48-hour induced […]
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Meningoencephalitis - Scott's Story
A Life Saved by Science, Luck and Determination A fragile beginning The fact is I don’t remember much from my early years. But here’s the key point: I really shouldn’t even be here. Around the age of two, I became critically ill. Somehow, I contracted meningo-encephalitis. Meningitis… with a side order of encephalitis. On their […]
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Varicella Zoster Virus Encephalitis - Jeanne's Story
Jeanne’s husband, Paul, shares her struggle following a VZV encephalitis diagnosis which tragically led to her passing away. Jeanne as a writer My wife, Jeanne, was a professional communicator and writer. She had just finished her first novel, Descended from Kings, a fictional account about warring cities in a distant world that she described […]
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Acute Disseminated Encephalomyelitis (ADEM) - Matteo's Story
Matteo’s journey through recurrent ADEM shows the uncertainty, resilience and hope faced by families affected by rare post-infectious neurological conditions. Matteo’s story My son Matteo is only three years old. Until recently, he was a healthy, happy little boy – playful, active, and full of life. Today, he is fighting this rare neurological disease that […]
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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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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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