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Anti-NMDAR Encephalitis Lived Experience - Rachael M's Story

Rachael's story of her anti-NMDAR encephalitis experience from the acute stage to recovery.

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Anti-LGi1 Autoimmune Encephalitis Lived Experience- Juliette's Story

Juliette's lived experience of anti-LGI1 autoimmune encephalitis from initial symptoms to recovery.

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Autoimmune encephalitis

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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Polly on her travels. She describes her lived experience of autoimmune encephalitis.

Autoimmune Encephalitis Lived Experience - Polly's Story

Below is Polly’s lived experience of autoimmune encephalitis. My name is Polly, I’m 23 years old, and on 25th April 2018, things took a bit of a turn for the worse! At the start of January 2018, I packed my bags and set off to New Zealand on a working holiday visa.  I was having […]

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Viral Encephalitis - Nicholas' Story - 5 years on

Five years on for Nicolas's mum. Sarah talks about her son's battle with the after effects of viral encephalitis. Nicolas fought for over 20 years before losing his life.

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Maddy's Story

Maddy is a 21-year-old who was diagnosed with Hashimoto’s encephalitis at the age of 16. Maddy speaks of her experience with her disease and the impact it hass had on her life going through high school and college. She encourages people to ‘defy expectations’ in life by letting go of what we think life should […]

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Macy's Story

HOW IT STARTED On July 3, 2020 I began my day with a 10-mile run in the Northeast Georgia neighborhood surrounding my childhood home. I followed with a smoothie, took my labrador retriever for a walk, responded to work emails, FaceTimed my partner across the pond, and celebrated an early Independence Day with an intimate […]

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Encéphalite auto-immune vécue - L’histoire d’Elisabeth

Bonjour, Je m’appelle Elisabeth. Je suis une étudiante française, je vais avoir 23 ans bientôt. Mes parents sont mariés et j’ai deux petits frères, maintenant plus grands que moi. Je râle beaucoup. Je râlais déjà beaucoup avant que cela m’arrive. Et pourtant, j’ai bien conscience que je suis une jeune femme chanceuse. Une survivante. Il […]

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Viral Encephalitis - Nicholas' story told by mum, Sarah

Sarah talks about her son's battle with the after effects of viral encephalitis. Nicolas fought for over 20 years before losing his life.

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Hayleigh's Story

Hayleigh, from London, became poorly with Anti-NMDAR encephalitis towards the end of 2012. As part of her degree at the University of West London in Ealing, she filmed a documentary about her story, speaking to family members, including her twin, Laura, her doctors as well as talking about her own experiences.  

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Hannah's Story - Part Two

Hannah was affected by Anti-NMDAR encephalitis. This is her story: One of my first memories of waking up was looking at the door beside my bed. I couldn’t move, my fingers were locked together like cement and my mouth was glued shut. I thought if I screamed I could maybe wake myself up from this nightmare, […]

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Hannah's Story

Hannah, from Dublin, was diagnosed with Anti-NMDAR encephalitis. This is her story: When I first woke up this woman called Martina and her daughter came into visit me. She hugged me and looked at me as if she knew me. I didn’t know who she was or how I knew her. This woman was in […]

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George's Story

George was diagnosed with autoimmune encephalitis in April 2021 after 9 months of living with the condition. He writes about his illness, diagnosis, the impact of his encephalitis and his ongoing treatment. Firstly, this story is not complete, perhaps as far as the Encephalitis is concerned, it might never be but I am approaching what […]

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Freya's Story

Sponsor Freya’s Cambridge Half Marathon on March 3, 2024 I suddenly fell very poorly in December 2019 aged 25. This is my story: I have always been active, I love to play sport and keeping healthy is a priority of mine. In September 2019, I entered the teaching profession with a spring in my step. Little […]

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Frances' Story

Frances writes: I am a 24 year-old woman living in Kent with my partner and recently have been diagnosed with autoimmune encephalitis. I was discharged from hospital in April but during my stay in the hospital I wrote an account of what I was going through. I was only able to write it during my […]

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Elissa's Story

On November 14, 2019, I went to the hospital for dizziness. I had been traveling for work for over five weeks, so I was diagnosed with vertigo and discharged. I started doing vertigo relief exercises and visiting an acupuncturist twice a week. On the 17th of November, my husband drove me to the acupuncturist as my […]

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Elisabeth's Story

My name is Elisabeth. I am a French student and I’m 23 years old. My parents are married and I have two younger brothers. I complain a lot. I did before it happened to me. But I am conscious that I am a lucky woman. A survivor. It has been four years since I got […]

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Corinna's Story

THE NEW SELF – RECOVERING FROM BRAIN INFECTION   I was sitting on top of a beautiful sand dune watching the sun disappear into the ocean, when I realised that I was no longer fit to do my job. I had travelled here with a group of writers to draft a story for a German […]

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Brie's Story

In November 2019 I started to feel run down. Initial diagnosis was an ear infection. However, after a week of antibiotics and steroids I wasn’t any better.

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Andrew's Story

This was the final part of our eulogy to Andrew, stolen from us by rhombencephalitis.

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Hannah W's story

Hannah from North Carolina was diagnosed with Anti NMDAR encephalitis in the summer of 2021. She writes about her experience in hospital and her return to university.

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Clair's story

When Clair woke up in hospital after falling ill with encephalitis, she had no idea that the people by her bedside were her parents. Her dad, Mark, tells her story.

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Chelsea's story

Chelsea talks about contracting Japanese Encephalitis in Thailand.

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Bev who shares her encephalitis story

Bev's story

Bev talks about being the full time carer for her son Richard who was affected by encephalitis in his early 20s.

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