Your Stories
Your Stories
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.
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. The videos can also be viewed on our YouTube channel.
Share your story
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.
If you have any questions please do get in touch.
Autoimmune Encephalitis Lived Experience - Polly's Story
Polly describes her lived experience of autoimmune encephalitis including her symptoms, treatment and recovery.
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Viral Encephalitis Lived Experience - Pete's Story
Pete shares his lived experience of Viral Encephalitis. He shares his journey though diagnosis, treatment and recovery.
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Meningoencephalitis Lived Experience - Paul's Story
Paul shares his lived experience of Meningoencephalitis. This includes his symptoms and how it affected his life, but also what helped in life after Encephalitis.
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LGi1 Autoimmune Encephalitis Lived Experience - Pauline's Story
Pauline was affected by autoimmune LGI1 encephalitis in 2015 and then again in 2017. Here she shares her story and experiences with us. This film is part of our My Brain and Me Project.
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Viral Encephalitis - Nicholas' Story - 5 years on
Five years on for Nicolas's mum. Sarah talks about her son's battle with the after effects of viral encephalitis. Nicolas fought for over 20 years before losing his life.
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Herpes Simplex Encephalitis Lived Experience - Natasha's Story
Natasha had encephalitis when she was just two years old. Here, she shares examples of her lived experience including fatigue and changes to her co-ordination.
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Anti-NMDAR Encephalitis Lived Experience - Michele's Story - Part Three
This is Part 3 of Michele sharing her son Ross’ lived experience of Anti-NMDAR Encephalitis. This includes the struggles with the care system, finally getting a diagnosis, treatment and life since treatment.
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Anti-NMDAR Encephalitis Lived Experience - Michele's Story - Part Two
This is Part 2 of Michele sharing her son Ross’ lived experience of Anti-NMDAR Encephalitis. This includes the struggles to get a diagnosis.
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Anti-NMDAR Encephalitis Lived Experience - Michele's Story - Part One
Michele shares her son Ross' lived experience of Anti-NMDAR Encephalitis. This includes the initial symptoms and the effect on Ross' family.
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Herpes Simplex Virus Lived Experience - Martin's Story
This is Martin's Herpes Simplex Virus lived experience. Martin discusses symptoms, diagnosis and how his life has changed since having encephalitis.
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Epstein Bar Virus Encephalitis Lived Experience - Mark's Story
Mark describes his Epstein Bar Virus Encephalitis lived experience. This includes diagnosis and how he is coping now.
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Anti-NMDA Encephalitis Lived Experience - Maddi's Story
Tricia talks about her daughter Maddi's diagnosis of anti-NMDA receptor antibody encephalitis. About how she went from a 'typical' 5 year old to showing signs of anger and aggression and the struggles that came with it.
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NMDA Autoimmune Encephalitis Lived Experience - Macy's Story
Macy talks about her lived experience of NMDA Autoimmune Encephalitis and how she fought to maintain her joy of running.
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Autoimmune Limbic Encephalitis Lived Experience - Lorna's Story
Lorna talks about her lived experience and induced coma as a result of unknown autoimmune encephalitis and limbic encephalitis.
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LGi1 Autoimmune Encephalitis Lived Experience - Lisa's Story
Lisa talks about her lived experience of autoimmune encephalitis which, in her case, cased seizures, mobility issues, problems with cognitive function such as short term memory loss and aphasia.
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Encéphalite auto-immune vécue - L’histoire d’Elisabeth
Elisabeth partage son expérience d’un diagnostic d’encéphalite auto-immune. La confusion que cela a causée et comment et comment elle a passé Noël, le Nouvel An et son 20e anniversaire à l’hôpital.
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Viral Encephalitis Lived Experience - Ken's Story
Ken, who was diagnosed at just 2 years old, talks about his experience of viral encephalitis and growing up with very little information in the 60's and 70's.
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Anti-NMDAR Encephalitis Lived Experience - Kelly's Story
Kelly talks about her experience of having meningococcal encephalitis as a seven month old and then 3 subsequent experiences of encephalitis including Anti-NMDAR encephalitis.
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Mengioencephilitis Live Experience - Katie's Story
Katie talks about her experience of Mengioencephilitis, that causes flu like symptoms, that she had while she was working for the NHS.
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Meningoencephalitis Live Experience - Katharina's Story
Katharina talks about her experience of Meningoencephalitis which can cause flu like symptoms. She tells her story from the memory of others and how her life has changed as a result of encephalitis.
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Anti-NMDR Encephalitis Lived Experience - Juliana's Story
Juliana talks about her lived experience of Anti-NMDR encephalitis which she had when she was just 14 years old and how her live changed as a result.
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Herpes Simplex Encephalitis Lived Experience - Joshua's Story
Joshua shares his experience of panic attacks, anxiety and fatigue as a result of his herpes simplex encephalitis diagnosis.
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Meningoencephalitis Lived Experience - Jeremy's Story
Jeremy shares his story of waking from a 10 day coma to a diagnosis of amoebic meningoencephalitis, a type of infectious encephalitis.
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Viral Encephalitis - Janet's Story told by husband, Peter
Janet's husband, Peter, recalls their experience of encephalitis when Janet was diagnosed in 2007 with viral encephalitis. She later passed away in 2018.
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