This is picture of Gill who has a lived experience of LGI1 Autoimmune Encephalitis.

LGi1 Autoimmune Encephalitis Lived Experience - 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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Kevin shares his lived experience of meningoencephalitis.

Meningoencephalitis Lived Experience - Kevin's Story

Kevin, from Canada, was working as a Proctor when he became ill with meningoencephalitis in 2019.

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Herpes Simplex Encephalitis Lived Experience - Richard's Story

Richard, a conductor from the USA, talks about how he has had to embrace new emotions as part of his ongoing recovery from Herpes Simplex Virus Encephalitis.

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Herpes Simplex Encephalitis Lived Experience - Larry's Story

Larry talks about his lived experience of herpes simplex virus encephalitis. Having recently moved to Washington DC he struggled to initially get help with a diagnosis for his symptoms.

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Janet's Story

Janet had an epileptic-type seizure one afternoon in January 2007 (writes her husband, Peter). She was at home with me, and I phoned 999. Within about two minutes, the first responders arrived and gave her oxygen and shortly afterwards the ambulance arrived. Janet was taken to the Princess Royal Hospital in Telford. The doctors were […]

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James' Story

There were no warning signs. As usual, James had had a busy week running his brewery business single-handed. The weekend was eventful too. We’d gone to the theatre on Thursday and then for a meal with friends on Friday. On Saturday evening, we went for a meal and to the theatre, then after the show […]

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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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Audrey's story

Audrey writes about the early signs of her illness as well as the long term affects encephalitis has had on her life after being diagnosed at age 58.

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Barbara's Story

Although I feel that my life has been affected by many events, even small ones, one specific event had a major effect on the direction my life took at the time. This event occurred when I came down with measles encephalitis at the age of six.

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Aurelio's story

Aurelia became poorly with HSV encephalitis in 2020. His daughter, AnnaMaria, shares his story.

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