Encephalitis International

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Three people every minute are diagnosed with encephalitis.

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Our mission is to rebuild futures around the world by saving lives, accelerating awareness and driving research.

What is encephalitis?

Encephalitis is an inflammation of the brain. It is caused either by an infection invading the brain (infectious encephalitis) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).

Your Stories

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Bickerstaff Brainstem Encephalitis - Rebecca's Story

I spent the next day in bed, barely able to walk without intense feelings of vertigo - my vision was blurred, balance was off, and I felt incredibly nauseous. I was wheeled off to the hospital in an ambulance at around 1 am and can remember lying in hospital very scared and ill, with lots of beeping and voices all around me. My vision seemed to fade at one point, and after that, everything is entirely blank. My only rather frustrating memory is being told to ‘walk it off’; luckily, my family were able to flag down a lovely nurse who saw how ill I was before taking me to the ICU. There was much worry about a tropical disease causing my symptoms, hence the speed of my admission to the intensive care unit.

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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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Autoimmune Encephalitis - Anti-NMDAR - 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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Upcoming Events

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My Brain & Medicine - New York, United States

Please note that this event is now fully booked. If you would like to join our waiting list please email mail@encephalitis.info ———————————————————————————————————————————————– Please note this is a FREE in-person event only for patients, family members and caregivers. My Brain & Medicine. Encephalitis Survivors and Caregivers Day Venue: New York-Presbyterian/Columbia University Irving Medical Center, 50 Haven […]

26 September 2025
Columbia University Irving Medical Center, 50 Haven_Suite 109 , New York, NY 10032, United States
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My Brain My Story 2025

Please note My Brain : My Story is a hybrid event (in-person and virtual via Zoom) We would love you to join us in York, England, – or virtually – at My Brain : My Story on Saturday 4 October 2025. This event is a hybrid event for anyone who wants to listen to the […]

4 October 2025
The Grand, Station Rise, York, YO1 6JD
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Seizures and encephalitis FREE webinar - patient event

Please note that this is an event aimed at patients. Programme 2.00pm (GMT) – Seizures and Encephalitis in Adults.  Dr James Mitchell MBChB, MRCP, Association of British Neurologists (ABN), Clinical Research Fellow and neurology registrar, University of Liverpool and The Walton Centre NHS Foundation Trust, UK 2.45pm (GMT) – Seizures and Encephalitis in Children.  Speaker […]

6 November 2025
Online
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