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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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Steve's Story - Part Two

Steve’s Story – From the outside Summer 2018. Read Part One The start Looking back there were signs from as early as July 2018 (writes Lisa). Steve had completed a half marathon on a hot day and, in the weeks afterwards, he started to describe his calf muscles as ‘bags of snakes’ – they were […]

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Steve's Story - Part One

My name is Steve and I work as a trainer within a social services setting. I am a runner (ultra/full/half-marathons), I surf, outdoor swim, mountain bike, play tennis, badminton and occasionally even table tennis. I love to move! That is a truth. Basically any sport outdoors I will give a go. I tell all this […]

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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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Jackie's Story

The following is an article that Jackie wrote for The Gavel, the quarterly magazine of the North Dakota State Bar Association. Jackie lives in Bismarck, North Dakota.   Lawyers have two great fears in life: 1) missing a deadline and 2) getting sick.  Missing a deadline is scary and keeps us awake at night, but […]

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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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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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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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Dave's Story - Part One

Part 1: January 2016 (aged 66) I have no recollection whatsoever of the initial stages of contracting encephalitis, nor the early stages of my diagnosis and treatment. Therefore, the first part of ‘my story’ has been compiled from the experiences of my family and friends, together with my medical team. The first sign that there […]

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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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Aliya's Story

Aliya was a 20-year-old college junior in Massachusetts, USA, when she was diagnosed with autoimmune encephalitis in December, 2019.

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