Your Stories
Your Stories
MY BRAIN AND ME
My Brain and Me is a unique project to share stories and experiences of encephalitis through a series of short films. You can find all the films here and on our YouTube channel, on our “My Brain and Me” playlist.
If you are in any way affected by these stories please do get in touch with our support team on support@encephalitis.info or call +44(0)1653 699599.
Our My Brain and Me Project is proudly supported by the National Lottery Community Fund.
Gavin's Story
This is the story of Gavin Lingenfelter, the strongest person I know. If you look at Gavin, you see a very handsome young man, who looks to have it all together. What you don’t see is the struggle inside that he deals with daily. Gavin was born a healthy 7lb, 7oz, 21in long, baby boy. […]
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Gary's Story
I lived in Detroit, Michigan, in February 1950. I was eight years old and in the third grade. I contracted the measles, which transitioned into encephalitis. The only symptom I had suggesting that it was encephalitis was I that could not stay awake. My mother telephoned my doctor and he said for her to call […]
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Gabe's Story
Every week in Nashville, Andy Gullahorn goes for a walk and meets up with Gabe Scott, and they give each other a high five. This small ritual became even more important when Gabe became poorly with encephalitis. Read more about their story in The Atlantic The following video is of Andy and Gabe performing Small […]
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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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Erin's Story
This story is about our daughter and the fateful day in 2014 which changed the course of our life (writes mum Michelle). Erin, who had just turned five, and our seven-year-old son Jack had both come home from school with flu-like symptoms, a fever, lethargy and a runny nose. We dosed them both up and […]
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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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Denis' Story
When I was a wee lad in 1952, I lived in Springburn, the Railway Capital of Scotland, amidst the stark dull and grey environs of smoke smitten buildings of the engines of empire, as Glasgow was then known as the second city of Empire. On a sadly eventful day, a mother took her infant son […]
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Dave's Story - Part Two
Part 2, February 2018 (aged 68): An update on my progress after I fell ill with autoimmune encephalitis in January 2016. General I feel that I have come a long way since my illness in January 2016 and I am sure my family and friends would agree on this. Some days I feel 100%, […]
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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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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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Charlie's Story
By Charlie’s mum and dad, Louise and Lee. Charlie will be 10 on the 9th March 2021 and we are nearly two years on from him falling ill with ADEM in February 2019. Towards the end of January 2019, Charlie came down with a cold and mild fever. We kept him off school to rest and take […]
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Charles' Story
I have penned a summary of my experiences with encephalitis to help those who have recently encountered encephalitis. Fortunately, my encephalitis leaves me with the knowledge that this illness does not have to be totally debilitating or fatal. In my case, positive medical action resulted in me surviving without any major ongoing problems. The causes […]
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Paula's Story
Paula became poorly with viral encephalitis just after her first birthday party.
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Ger's story
Ger tells the story of his three experiences with Anti-NMDAR encephalitis and how it affected the course of his life.
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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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Cerys' Story
My daughter was diagnosed with Anti-NMDA Receptor encephalitis just before her 13th birthday. I had never heard of this disease before and it has been a scary year, constantly worrying of a relapse and having little information about this disease. Encephalitis International’s website has helped so much. Being able to read other people’s stories and their roads […]
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Bruno's Story
My encephalitis started suddenly from one day to the next. I was 16 at the time, and I was half way through my lunch hour when it happened. All of a sudden and without any warning, I felt very dizzy and lost all sense of balance. I spent a good deal of the afternoon with […]
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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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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
My father, Aurelio, was diagnosed with HSV-1 Encephalitis in October 2020. He does not remember much of what happened to him except vivid dreams and hallucinations, so I’m here to tell his story and spread awareness on his behalf.
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Annette's Story
Like so many others, I had heard of encephalitis but didn’t really understand what it was.
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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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