Your Stories
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Here, our members and volunteers share their stories and experiences of encephalitis.
If you are in any way affected by these stories please do get in touch with our support team.
If you would like to share your own story, please visit our Submit Your Story page.
These stories are incredibly valuable for others to read. They can help people, directly or indirectly affected, to understand more about encephalitis and deal feelings such as loneliness and isolation.
We usually ask for written stories with sub-headings relating to things such as diagnosis, treatment and ongoing recovery.
We ask that you do not name individuals or medical centers without their consent. Please use generic terms such as friend, parent or doctor.
Many of the stories and videos below were filmed as part of the My Brain and Me project which is proudly supported by the National Lottery Community Fund. Funding has also been provided by GSK towards developing our My Brain and Me project. The videos can also be viewed on our YouTube channel.
If you have any questions please do get in touch.
Autoimmune Encephalitis Lived Experience - Philippa's Story
It was terrifying. The uncertainty, the not knowing what each day would bring, was one of the hardest parts. He spent six long months in hospital, followed by a further eight months in a rehabilitation centre. Those fourteen months were filled with fear, exhaustion, hope, and small victories that meant the world to us. Our story is still continuing and if I’m honest, it’s been nothing short of a rollercoaster.
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Anti-NMDAR Encephalitis Lived Experience - Alex's Story
I received a call from Alex complaining that she had something buzzing in her ear and that it is making her uncomfortable. On the same day in the afternoon, I received a call from my sister telling me that Alex had collapsed and she was brought to the nearest hospital. When she woke up, the hospital staff, without proper diagnosis, wrongly accused her of taking prohibited drugs just because she was shouting, hallucinating and was very disoriented.
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Infectious Encephalitis Lived Experience - Ava's Story
In July 2024 we had returned from a family holiday. Ava, at the time, was 4 months old and we'd noticed that she had been irritable, had developed sores near her mouth (later identified as the Herpes Simplex Virus type 1) and one day suffered a 20 minute focal seizure.
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Limbic Encephalitis Lived Experience - Karla's Story
English translation - It all started in September 2022. That year, I was going out partying a lot. For Mexican Night, I went out to dinner and celebrate with some friends. Around that time, my work schedule changed to the night shift, since I am a nurse. I clearly remember spending a lot of time worrying about how those shifts would go. When I started them, my mum and sister later told me that I had mentioned suffering from insomnia and nightmares.
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Autoimmune Encephalitis Lived Experience - Pol's Story
It started on a Sunday, during a family lunch, when Pol our active, healthy 7-year-old developed a high fever. At first, we thought it was just a virus. But within days, his behavior became alarming - extreme lethargy, emotional outbursts, and sensory issues especially with his back. Then came the insomnia, strange gazes, mumbling, and isolation. As a mental health professional, I knew something was very wrong.
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Tick-Borne Encephalitis Lived Experience - Dominic's Story
My symptoms followed swiftly: deep fatigue, intense headaches, and muscle pain. At the time, these were all brushed off as “exam stress.” But I knew something wasn’t right. That was the beginning of a decades-long battle against invisible illnesses—and worse, against disbelief from the medical system. As the years passed, my symptoms worsened. Migraines, irregular heart rhythms, and an unbearable sensitivity to light and sound took over my daily life. I sought medical help, but again and again, I was told it was “psychological.” I was made to feel like I was imagining it all.
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LGi1 Autoimmune Encephalitis Lived Experience - Pauline's Story
From nurse to patient - In this lived experience episode of The Encephalitis Podcast, Prav talks to Pauline – one of our wonderful Team Encephalitis volunteers. Pauline shares her own story of LGi1 autoimmune encephalitis, life as a nurse and about being a support volunteer for Team Encephalitis.
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Anti-NMDAR Autoimmune Encephalitis Lived Experience - Judiel's Story
Judiel Diaz, a nurse from the Philippines, shares her powerful journey of surviving anti-NMDAR autoimmune encephalitis. Misdiagnosed at first, she eventually received life-saving treatment during the height of the pandemic. From memory loss and hallucinations to regaining her identity and passing the US nursing exam, Judiel’s story is one of resilience, love, and hope.
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Anti-MOG Receptor Autoimmune Encephalitis - Theo's Story
That Tuesday morning, Theo walked into our bedroom with a slightly dazed look saying he felt sick and proceeded to lie on our bed. Within minutes, he had his first tonic clonic seizure. It continued for several frantic minutes while paramedics made their way to us. A few hours later we were let go from A&E saying that it’s not uncommon to have an unexplained afebrile seizure and many people never go on to have another.
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Human Herpes Virus-6 (HHV-6) Encephalitis Lived Experience - Sameer's Story
I was attending university, making new friends, and working part-time jobs to support myself. Life was moving forward beautifully. But then, everything changed. It started with a simple fever—nothing unusual, or so I thought. I expected to recover in a few days. But the fever didn’t go away. It worsened.
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Viral Encephalitis Lived Experience - Craig's Story
Craig shares his eight-month journey through illness and recovery of viral encephalitis. From the sudden onset of symptoms to life-threatening seizures, temporary blindness, and the emotions of recovery.
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CASPR2 Autoimmune Encephalitis Lived Experience - Subha’s Story
CASPR2 autoimmune encephalitis. What began with subtle symptoms like blurry vision and confusion quickly escalated into a terrifying medical crisis, leading to memory loss, personality changes, hallucinations, and neurological disorientation.
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Anti-NMDAR Encephalitis Lived Experience- Jenny's Story
Jenny shares her journey after being diagnosed with Anti-NMDAR Encephalitis What began as unexplained seizures and confusion was initially dismissed as anxiety, leading to a delayed diagnosis that turned her life upside down. Now involved in volunteer work and brain injury support groups, she uses her experience to help others with similar conditions.
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Acute Disseminated Encephalomyelitis (ADEM) Lived Experience - Regináe's Story
My name is Regináe and I was 4 when I was diagnosed with Acute Disseminated Encephalomyelitis (ADEM). My dad noticed that I was acting strange and acting like I was possessed, then all of a sudden I started shaking constantly and couldn’t stop. My parents then admitted me to hospital and they didn't know what was wrong with me.
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Acute Necrotising Rhombencephalitis Lived Experience - Eldon's Story
In April 2023, life as I knew it changed in an instant. It began with an ache in my lower back—something I brushed off as a minor strain. I even visited an osteopath, convinced I had just overdone it somehow. But the discomfort didn’t ease. Within days, I tested positive for COVID-19, and soon after, the real nightmare began.
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Anti-NMDAR Encephalitis Lived Experience - Alice's Story
I was a healthy 27 year old woman who loved paddled boarding and aerial circus prior to being diagnosed with Anti-NMDAR Autoimmune Encephalitis. I was on a weekend away with my mother and partner in England and complained of sore ears. Later that night I took my first seizure and an ambulance was called! My symptoms began suddenly, manifesting with seizures, manic psychotic episodes, hallucinations, agitation and oral facial dyskinesia.
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Tick-Borne Encephalitis Lived Experience - Antti's Story
I got tick-borne encephalitis in autumn 2023, here some memories and insights of the complex journey with the disease. The whole thing started in a Teams meeting with a customer. I suddenly felt quite nauseous and had to close the meeting early, started to vomit and horrible headache begun. Luckily, I was at home and my wife came soon to check my situation. Later, I heard that she took me to an emergency unit at the University center hospital next day when my fever raised up to 41 ˚C – I don’t have any clear memories of that.
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Anti-GAD Encephalitis Lived Experience - Alison's Story
Alison shares her experience of Anti-GAD encephalitis and how she went on to raise funds through her gym, Life’s Peachy’ Fitness for Encephalitis International. I started falling sick in April 2024 after my husband came home from a work trip with stomach bug. He was better within 24-48 hours while I got progressively more unwell. I […]
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Autoimmune Encephalitis Lived Experience - Diane's Story
Diane had auto-immune encephalitis in 2018, when she was 15 which encompassed months in a semi-coma state where she couldn’t talk, walk, eat or see due to complete vision loss from high intracranial pressure.
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Anti-NMDAR Encephalitis Lived Experience - Vickie's Story
I don’t remember anything. My first memory is of me being told that I couldn’t go back to work, I was very ill, and those of you who have had it remember what that feels like. I was apparently in an induced coma, had a lumber puncture, seizures, nearly died… and I was lucky to be speaking and as recovered as I could be.
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Anti-NMDAR Encephalitis Lived Experience - Roz's Story
Roz, who was affected twice by anti NMDAR encephalitis while completing her secondary education, shares her story with us. The video was filmed as part of our My Brain and Me Project.
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Meningoencephalitis Lived Experience - Kristen's Story
In May of 2023 I started with a very high fever. I passed it off as normal; as I got sick very often, just had pneumonia a month prior. I work with young children which I believe weakened my immune system over the years. I’d only travelled out of the country 8 months ago but was otherwise fine. After day 2, the fever wasn't subsiding and came out in a red rash in my extremities, prompting me to go to a doctor.
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Herpes Simplex Virus Encephalitis - Ismael's story, told by wife, Rosa
For me, as his wife, has been a challenge to adapt the new family dynamics with the illness. My advice to all of us who have a family member with encephalitis is that as primary caregivers we take care of our physical and emotional health. In my case, I had to attend psychotherapy and take medication for depression and anxiety.
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West Nile Virus Lived Experience - Jim's Story
I went on holiday to Goa in India in March 2024 . I remember getting a couple of mosquito bites but they don't usually affect me, so thought no more of it. Upon return to the UK, after a couple of days I started to feel unwell, after another couple of days it got much worse and I researched the symptoms and thought it may have been Malaria. 6 days after returning from holiday I called 111 and as a result was taken into hospital in Southampton.
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