Your Stories
Share your story
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.
Herpes Simplex Encephalitis Lived Experience - Corinna's Story
The HSV encephalitis had caused the amygdala to dysfunction, sending me on an unpredictable emotional rollercoaster ride. When I first arrived at the emergency department, doctors couldn’t find a clear cause to my symptoms of feeling disoriented, dizzy, nauseous and suffering a severe headache.
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ADEM Lived Experience - Charlie's Story
However, on the morning of the 6th February, he woke at 4am, told us he felt sick and rushed to the toilet and immediately vomited. He felt hot to the touch and his temperature was over 40. This is a high temperature, but we were used to Charlie having fevers as he had suffered from recurring tonsillitis for six years before they were finally removed in July 2018.
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Viral Encephalitis Lived Experience - Paula's Story
This is Paula's Viral Encephalitis Lived Experience. She discusses how encephalitis affected her childhood and how she is doing now.
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Anti-NMDAR Encephalitis Lived Experience - 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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Herpes Simplex Virus Encephalitis Lived Experience - Audrey's Story
Audrey discusses herpes simplex virus encephalitis lived experience, including the early signs of her illness and long term effects encephalitis has had on her life after being diagnosed at age 58.
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Anti-NMDAR - Cerys' Story told by mum, Kerry
We called an ambulance and she was fully recovered by the time they arrived with no recollection of what had happened. She was taken to A&E where a CAT scan and observations all came back clear. They even considered sending her home because she was alert and well. She was only kept in because I mentioned the changes in her over the past week or so.
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Herpes Simplex Encephalitis Lived Experience - 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 friends in the school library sitting down not being able to move much.
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Herpes Simplex Encephalitis Lived Experience - 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. I was lethargic, sleeping for hours of the day. I began to become unsteady on my feet. The GP added in another antibiotic and some more steroid ear drops. He still felt it was a bad ear infection and advised me to continue.
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Measles Encephalitis Lived Experience - 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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VZV Meningoencephalitis Encephalitis Lived Experience - Annette's Story
When I developed the mother of all headaches, it was not surprising that I was discharged from A&E after a night of observation, with the diagnosis of a tension headache. They had done a CT scan and a chest X-ray but results were normal. However, they had not really taken into account the fact that I was confused, light-sensitive and vomiting. I had lost my appetite and found drinking water difficult as everything tasted revolting and made me feel even worse
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Anti-NMDAR Encephalitis Lived Experience - Ana's Story
Ana was a happy 10-year-old just finishing the 4th grade when she came down with flu-like symptoms. Terri (Ana's mom) describes Ana's Anti-NMDAR encephalitis lived experience.
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Encephalitis Lived Experience - Anais' Story
I was 15, going into 4th year, and it was September so at this point school had been in commencement for about 2 weeks. The first sign of encephalitis, I only realised AFTER the entire ordeal. I was in class and suddenly I felt my body go still - I felt a wave of nausea hit me full force, my hands were shaking and I couldn’t move. I remember thinking “I need to leave, what is happening?” but I couldn’t speak - it was like I had gone catatonic.
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Encephalitis Lived Experience - Amy's Story
I was finally given a diagnosis and treatment was commenced. I was sent for a PET scan to check for tumours/cancer which thankfully came back normal. I had a central-line inserted, and I was administered several rounds of high dose steroids, and started on monthly cycles of plasmapheresis as an out-patient. I am on monthly intravenous immunoglobulin, and immune-suppressing tablets which I take daily. I've also had Rituximab infusions.
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Measles Encephalitis Lived Experience - Zanna's Story
It's a shock to be this ill. It changes your perception, your place in your own life, your relationship to others. Perhaps you feel cast adrift by the virus whose greatest threat is past; you’ve survived; but you feel physically and emotionally exhausted. You may not be able to get up or down stairs. You may not be able to get out of bed at all.
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Viral Encephalitis Lived Experience- Betzabé's Story
Although we -as Betzabé’s family- knew that she was not able to live the life that she lived before the brain injury, we were still fighting very hard to help her to build a worthwhile new life within her capabilities. We hoped that she could recover at least and have the independence as a person to look after herself and her youngest son.
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A letter from your brain
A Letter From Your Brain by Stephanie St. Claire may help you understand what happens with your brain after encephalitis.
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Anti-NMDAR Encephalitis Lived Experience - Hannah W's story
On September 4th, I was initially admitted to a psych ward. I was diagnosed with Bipolar Disorder Type 1 with psychotic features and mania. After no improvement was observed, I was admitted to another hospital on the 15th as it was suspected my condition was not psychiatric, but medical. After several weeks of assessments, tests, and procedures, I was diagnosed with Anti-NMDA Receptor Encephalitis a rare auto-immune disorder where antibodies attacked the receptors of my brain.
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Herpes Simplex Encephalitis Lived Experience - Aurelio's story
My father was diagnosed with HSV-1 Encephalitis in October 2020. My father is what you would call a stand-up guy, the life of the party, a heart of gold-type person. He fills every room he walks into with love, joy, and happiness so naturally this incident heavily affected all our lives: friends, family, and everyone around us.
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Herpes Simplex Encephalitis Lived Experience - Hannah J's story
Hannah, a primary school teacher, fell ill with Herpes Simplex encephalitis in the Autumn of 2017. Watch almost two years on as she takes us on her journey from her time in hospital, through her rehabilitation, and the impact the illness has had on her and her family.
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Herpes Simplex Encephalitis Lived Experience - Dawn's story
Dawn - who was affected by Herpes simplex virus encephalitis at the age of 17 - talks about her experiences of encephalitis, her recovery, and its impact on her life.
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Japanese Encephalitis Lived Experience - Chelsea's story
As part of the My Brain and Me series Chelsea talks about when she contracted Japanese encephalitis whilst in Thailand. If you are affected by this story at all we encourage you to get in touch with our support team.
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Caring for my son with encephalitis - Bev's story
As part of our My Brain and Me project, Bev talks about being the full time carer for her son Richard who was affected by encephalitis in his early 20s.
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Stolen Lives
A short video about what encephalitis is and how those affected are supported by Encephalitis International.
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Encephalitis Lived Experience - Becky's story
Becky, who had encephalitis when she was 16, in May 2012, shares her story with us. She talks openly about her after-effects, and shares her advice for adapting after encephalitis.
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