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.
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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Maddi's Story
Before November 2015, my daughter Maddilyn was a ‘typical’ 5 year old (writes Tricia). She was silly, loud, full of energy, and bit sassy. She had always been a kind and affectionate child. She was helpful and mindful of others, until one day, she wasn’t. Suddenly, Maddilyn became sarcastic, aggressive and combative. Everyday things became […]
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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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Lorna's Story
In January 2013, I was sent home from work as a colleague recognised that I wasn’t myself. The next day I was admitted to hospital, and four weeks later, after two drug-induced comas, countless investigations and a five-day treatment of plasmapheresis, I was discharged from hospital. I have been extremely lucky. My husband was called […]
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Lisa's Story
As part of our My Brain and Me project, Lisa from Canada, shares her story of falling ill and living with autoimmune encephalitis (LGI1) If you are affected by this story at all we encourage you to get in touch with our support team. Video by Jack Chipman Lisa’s Story: I was diagnosed with LGI1 Autoimmune Encephalitis (AE) in […]
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Le récit 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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Larry's Story
In the mid-1990s, I suddenly had double vision. I was fatigued, but had no fever. We had only recently come to the Washington DC area and had no family doctor. We made some calls and set up appointments with doctors. They could provide no information except that it didn’t fit their specialty. One night I […]
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Ken's Story
How do you tell a story when you have no idea about how it began? Late in 1966, as a healthy, robust 2-year-old, I am told that my parents noticed change in my dexterity. Apparently, I had a fixation for taking a piece of cloth and running my hands from inside to out with both […]
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Kelly's Story
Please note: It is very rare for someone to have several relapses of encephalitis. If you have any concerns about your own health, please contact our support team. My name is Kelly and I have had encephalitis four times and meningitis once. I had meningococcal encephalitis when I was 7 months old. I then had encephalitis when […]
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Katie's Story
My story starts on a Sunday when I first got a headache. I’d been to an aquarium earlier in the day and thought maybe the lights had triggered it. I woke on Monday morning and still had the headache but just didn’t feel right, so I called in sick to work. I work for the […]
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Katharina's Story
I want to start with saying that I do not remember most of what happened during the hospital stay, and what I know is what I read from the medical records and from people talking to me. I started having a very dull headache that cause some pain but was manageable with over-the-counter pain meds. […]
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Juliana's Story
It all started in the first week of my freshman year of high school when I was only 14 years old. I began to get very anxious all the time, I would have fuzzy thoughts and I was not able to concentrate during class. I thought this was all part of the nerve-wreck of starting […]
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Joshua's Story
Hey there! My name is Joshua, and I am a survivor of herpes simplex encephalitis (HSE). It is currently almost eight months since I was diagnosed, but it has taken me until now to honestly reflect upon what happened during that time. Growing up, I was always driven by my family to excel in my work. My […]
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Jim's Story
My name is Jim Kirby and I am recovering from meningoencephalitis. I used to be active, able and always driving myself to be better. I was involved with local communities and charities, always trying to be more when it came to my personal and professional passion for health and social care. In hindsight, I was […]
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Jeremy's Story
In early 2013, I had a kidney transplant thanks to a donation from my wife, Sue. Initially, you have a very low immune system which is slowly strengthened over the weeks and months that follow so your body does not reject the new kidney. Everything was fine until three months later when I went home […]
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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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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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Isabella's Story
Towards of the end of the half-term holidays in October 2017, my daughter Isabella went from being a lively, bubbly nine-year-old to suddenly complaining of headache and flu-like systems (writes mum, Madalen). Over the weekend, Isabella would only sleep and drink water and go to the bathroom when she needed. She did not have much […]
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Nicholas' story
Nicholas was our eldest and only son, with two younger sisters (writes mum, Sarah). At the age of 16 years, Nicholas was struck down by a completely random virus, which caused encephalitis and subsequent brain damage. He was in intensive care for a long while and had to learn to walk, talk, eat, read, and […]
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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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