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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
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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Autoimmune Encephalitis Lived Experience - Aliya's Story
I quickly was diagnosed with bipolar 2 disorder and I had a new treatment plan, everyone knew I’d be okay. That was until my roommate found me seizing in my room; I was immediately sent to the hospital with uncontrollable seizures, transferred to another hospital, put under a medically-induced coma, was on a forced medical leave from school, and was ultimately flown back to Philadelphia.
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Epstein Barr Encephalitis - Alex's Story told by mum, Pennie
We got Alex to the Emergency Room. As the day progressed, Alex’s voice became higher and more shrill. When he was asked questions at the hospital he would seem confused and look at us to answer for him. A cat scan of his brain was done and he was given a lumbar puncture. His dad held him up for LP and he fell asleep during the procedure. We knew something was very wrong - who could fall asleep while getting a painful lumbar puncture?
Read StoryFull Event Archive
This section is intended for use only on the main Events page.
Great North Run
The AJ Bell Great North Run is the world’s biggest half marathon, with 60,000 runners taking on the 13.1 mile route from Newcastle to South Shields. Register your interest for 2026!
My Brain & Medicine Birmingham, England 2026
My Brain & Medicine (MB&M) is an in-person event only. We would love you to join us in Birmingham, England on Friday 9 October 2026. This event is for anyone who wants to listen to the experiences of people who have been directly or indirectly affected by encephalitis and learn more about the after-effects. There […]
Encephalitis 2026 - Registration
7th and 8th December 2026 Royal College of Physicians (RCP), London and virtually (Please note the attendance is both in-person and virtual. Those who register will be able to watch the Conference sessions on demand for 60 days after the event) Registrations are now open! (in-person and virtual tickets are available) Book your tickets here […]
Ultra Challenge - Walk, Jog, or Run
Whether along stunning coastlines, or trails through wonderful countryside, your Ultra Challenge® will be unforgettable. Walk, jog or run - take on a 10km, 25km, 50km 75km or even a 100km Ultra Challenge.
UK Challenges - Run, Tough Mudder, Bungee
Want to run your first 5k? Or how about the challenge of a marathon or obstacle race? There are plenty of challenge options in the UK to support us!
Global Running Challenges
Sight-seeing and running combine brilliantly for these global challenge events. Run through must-see cities and past iconic landmarks whilst supporting Encephalitis International!
Cycling Challenges
From short cycles to epic multi-day international rides, there is a huge range of cycling challenges to choose from. Get on your bike and support Encephalitis International!
SuperHalfs Series
The SuperHalfs Series brings together six epic destination half marathons which runners complete to secure their SuperMedal and a place in the SuperHalfs Hall of Fame. The events take place in Berlin, Cardiff, Copenhagen, Lisbon, Prague and Valencia. What an awesome challenge to take on in support of Encephalitis International!
London Marathon
We have been unsuccessful in receiving a London marathon charity ballot place for 2027. The public ballot for 2027 is now open, you can apply for your own place here: Enter the ballot | London Marathon Events The London Marathon is one of the world’s biggest marathon, with 55,000 runners taking on the route […]
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