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.
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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Anti-NMDAR Autoimmune Encephalitis - 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 - Jim's Story
The type of encephalitis that I developed was one born of stress. It manifested itself as shingles, and instead of just causing a rash and impacting me physically, it raced up my spine and took my brain by force. Not just the temporal lobe, but also the lining of the brain too. No one can say why other than stress, and there is no single trigger point that can be identified at present. All that can be said is that my brain, my mind and who I once was had reached their breaking point.
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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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Limbic Autoimmune Encephalitis Lived Experience - James' Story
Sue talks about her experience of James being diagnosed with limbic autoimmune encephalitis and how there were no warning signs. Read about his diagnosis and recovery.
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Autoimmune Encephalitis Lived Experience - Jackie's Story
This is the article that Jackie wrote about her experience of encephalitis for The Gavel, the quarterly magazine of the North Dakota State Bar Association. She talks about her diagnosis or autoimmune encephalitis.
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Viral Encephalitis - Nicholas' story told by 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 basically live, all over again. Nicholas’ mental age never fully recovered, and he became the perpetual teenager in his thoughts and actions.
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