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Encephalitis International

@encephalitisinternational

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The brain inflammation non-profit. Our mission: Rebuilding futures by saving lives, raising awareness, and driving research.
www.encephalitis.info

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Most people have never heard of FIRES, and that's part of the problem.

Febrile infection-related epilepsy syndrome (FIRES) is a rare, severe form of epilepsy that typically begins in previously healthy children, usually following a mild febrile illness. Within days, seizures can begin and become very hard to control.

Swipe to learn what FIRES is, how it starts, what happens next, and when to seek emergency help. Knowing the signs can save precious time.

Omar is 8 years old. He survived FIRES, and we're raising funds for his rehabilitation and treatment. You can read his story at the link in our bio.

Please share this post. You never know who might need it.

عظم الناس لم يسمعوا عن FIRES من قبل، وهذا جزء من المشكلة.

متلازمة الصرع المرتبطة بعدوى حموية (FIRES) هي شكل نادر وشديد من الصرع، يبدأ عادةً عند أطفال كانوا أصحاء، وغالبًا بعد مرض حموي بسيط. وخلال أيام قد تبدأ النوبات وتصبح شديدة الصعوبة في السيطرة عليها.

اسحبوا لتعرفوا ما هو FIRES، وكيف يبدأ، وماذا يحدث بعده، ومتى تطلبون الإسعاف. معرفة العلامات قد توفر وقتًا ثمينًا.

عمر عمره 8 سنوات. نجا من FIRES، ونجمع تبرعات لتأهيله وعلاجه. يمكنكم قراءة قصته من الرابط في البايو.

شاركوا هذا المنشور، فلا تعلمون من قد يحتاجه.

#FIRES #FIRESsyndrome #NORSE #RareDisease #RareEpilepsy #PediatricEpilepsy #EpilepsyAwareness #SeizureAwareness #HelpOmar

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🌍𝑨𝒔 𝒆𝒗𝒆𝒓𝒚 𝒚𝒆𝒂𝒓, 𝒂𝒏 𝒆𝒗𝒆𝒏𝒕 𝒏𝒐𝒕 𝒕𝒐 𝒃𝒆 𝒎𝒊𝒔𝒔𝒆𝒅

🧠Encephalitis 2026, the event organised by @encephalitisinternational and dedicated to infectious and #autoimmuneencephalitis , covering topics such as prevention, epidemiology, pathogenesis, diagnosis, treatment and rehabilitation in both children and adults.

🔬Cutting-edge insights will be presented by world-renowned experts in the field of brain inflammation, who will address current issues, key research questions and approaches to major clinical challenges, in the light of the latest scientific discoveries.

"For a world without death and #disability from #encephalitis"

🤝 AISiDiR will be there – thank you @encephalitisinternational
@avaeaston

#raredisease #encefaliteautoimmune #neurologia

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NOTICIAS DE INVESTIGACIÓN A NIVEL INTERNACIONAL 🧠🔥🙌🏼
Nueva guía sobre la encefalitis autoinmune en psiquiatría.

Encephalitis International - La organización sin fines de lucro sobre la inflamación cerebral

* ¿Qué hay de nuevo?
En septiembre de 2026, la Red Alemana de Investigación sobre Encefalitis Autoinmune (GENERATE) publicó recomendaciones en la revista Molecular Psychiatry.

Más de 50 psiquiatras y neurólogos establecieron cómo deberían abordar los servicios psiquiátricos la búsqueda de la encefalitis autoinmune (EA).

* Real, tratable, pero poco común

La EA es una causa real y tratable de enfermedad psiquiátrica. También es una causa poco común.

Se encuentran anticuerpos bien caracterizados en menos del 2% de las cohortes alemanas de líquido cefalorraquídeo en psiquiatría.

Los autores advierten contra el sobrediagnóstico, los resultados falsos positivos en sangre y el tratamiento inmunológico inapropiado.

1️⃣Paso 1. Buscar señales de advertencia
Síntomas neurológicos como convulsiones o alteraciones de la conciencia, a menudo acompañados de psicosis o posteriores a esta, cambios de comportamiento o ansiedad.

Señales de alerta (Red flags): deterioro rápido, cambios cognitivos marcados, alucinaciones visuales.

Ningún signo por sí solo es concluyente por cuenta propia.

2️⃣Paso 2. Investigar
Resonancia magnética (RM / MRI)

Electroencefalograma (EEG)

Análisis de sangre

Punción lumbar

3️⃣Paso 3. Analizar con cuidado
Analizar muestras pareadas de sangre y líquido cefalorraquídeo (con algunas excepciones, como LGI1).

Comenzar con un panel dirigido de anticuerpos bien establecidos. Solo ampliar las pruebas si la sospecha sigue siendo alta o los resultados no son claros.

Un resultado positivo en sangre por sí solo, especialmente en niveles bajos, no constituye un diagnóstico.

4️⃣ Paso 4. Revisar en conjunto
Los autores proponen comités inmunológicos (immunoboards): psiquiatras, neurólogos, inmunólogos, neuropsicólogos y especialistas de laboratorio revisando juntos los casos difíciles, siguiendo el modelo de los comités de tumores en oncología.

CONTINÚA EN EL PRIMER COMENTARIO ➡️

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“And the cruel truth was this: if more people had donated blood in the week leading up to that moment, her treatment would not have been delayed, and we would not have been standing there at all.”

(PLEASE SHARE to encourage people to book a blood donation as a matter of urgency!!!!)

These words from my @tedxbrisbane talk are not just a reflection on the most terrifying moments of our lives. They are a warning about what is happening in Australia right now.

🩸 Australia is facing a blood supply emergency.

@lifebloodau has reported that blood reserves have fallen by 60% since June, reaching their lowest levels in almost a decade, with an urgent call for 16,000 donors.

For families like ours, these shortages aren’t statistics, headlines or an inconvenience.

They are a very real threat to the lives of people we love.

We know what it feels like to stand beside our critically ill child, knowing the treatment she desperately needs depends on the generosity of complete strangers.

We know what happens when there simply aren’t enough donations to meet demand.

And we know that behind every delayed treatment is a person, a family and a life hanging in the balance.

Blood donation isn’t simply an act of kindness. It is an essential part of keeping Australians alive.

If you’ve ever considered donating blood or plasma, please don’t wait until someone you love needs it.

🩸 Book a donation with @lifebloodau.

❤️ Join the Milkshakes for Marleigh Lifeblood Team.

🎤 Watch my @tedx_official talk, The Life-Saving Act Nobody Sees, and understand what’s really at stake.

Because no family should have to discover the consequences of a blood shortage at their child’s bedside.

#MilkshakesForMarleigh #DonateBlood #DonatePlasma #AustralianRedCrossLifeblood #TEDxBrisbane BloodDonation

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💛 So so happy for lovely Jo & her Dad. Wirral 10km tick, @btrliverpool , amazing event, well done everyone, totally recommend ✨

We all have a story to get to a start & finish line of any goal in life.... it’s brave, any only you truly know why it matters,

Complete super stars & their family support crew.

It’s the little things, the leaps we take, the care we share, the love we hold… what’s your autumn leap?

Privileged to scamper around with them today... and complete @macmillancancer fundraising for this year, a whisker short of £8k, YOU are all incredible... this will make such a difference, thank YOU,

Liverpool & it’s people are great... every time I’ve been it’s filled with happiness.... from seeing @ludovico_einaudi to @adhd_untangled coach cohort with @neiladhdcoach, giving a keynote talk in the stadium & becoming friends with the magic @alikichrysochou after her performance with @encephalitisinternational , goood times,

Coaching helps you achieve a goal & most importantly believe in yourself, with tools and support,

For as the beetles say,

Let it be
You may say I’m a dreamer
And… There will be an answer

All you need is love 💛

What’s happening for you this week?
Priorities of three… wellness, purpose, joy/resilience

big support,

Kim ✨

#wirral10km #ukrunchat #mindsetcoach #lifeaftercancer

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encephalitis symptoms mnemonic from Encephalitis International. sharing this as an encephalitis survivor.

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From depression & suicidal to a wonderful life🙏❤️

#worldmentalhealthday #mentalhealth #encephalitis #survivor #winning

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I have a confession to make…

I have never been good at paying attention to my mental health. Throughout my life I have always pushed through stressful events and carried on, often to the detriment of my health.

I had seen others benefit from counseling over the years and recognized its value but never thought it was something I needed.

In 2025, when I was diagnosed with PNES - psychogenic non-epileptic seizures (aka functional seizures) I learned that when the brain rewires after being injured from something like encephalitis, the rewiring can result in new pathways being formed. This can make the brain perceive and process stressful events differently.

I finally learned that I needed to begin addressing the ambiguous loss, trauma and grief and start addressing my mental health.

It’s still not something I’m comfortable with, but with the help of a counselor, I am taking baby steps towards improving my mental health.

As a retired nurse and survivor of autoimmune encephalitis, this World Mental Health I’m sharing my story to raise awareness and make others feel less alone.

I write more about it all in my new book, Songbirds Keep Singing, available now.

#worldmentalhealthday #encephalitis #chronicillness #mentalhealth #braininjuryrecovery

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First health update in a while 🧠❤️

I’ve just come out of another follow-up appointment and today I got to see my MRI and the scarring that’s been left on my brain.

I won’t lie, seeing it was hard to take. But if this journey has taught me anything, it’s how resilient we really are.

There are good days and difficult ones, but I’m still here, still recovering and still moving forward.

If you’re going through something yourself — keep going, stay positive and don’t give up. Things do get better. ❤️

I’m also proud to be working closely with @encephalitisinternational to raise awareness and support others going through the same journey.

One day at a time 🙏🏼

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There are parts of my encephalitis journey that I’ve found really difficult to talk about, especially the impact it has had on my mental health. 🤍

On Friday, I had the opportunity to speak with People Magazine specifically about my mental health following encephalitis the struggles that can come after the physical recovery, the part of recovery that isn’t always visible.

With September being Suicide Prevention Month and World Mental Health Day coming up on 10 October, it feels like the right time to share

There’s so much more to recovering from encephalitis than learning to walk, talk and live normally again. The mental battle afterwards has been one of the hardest parts of my journey, and I’m so grateful I got the opportunity to share my experience.

I hope sharing my story can help start conversations about mental health after encephalitis because the scars you can’t see can sometimes be the hardest ones to heal.

If you’re struggling, please reach out. You don’t have to go through it alone.

Please check it out, share it, and most importantly, keep the conversation around mental health going. 🫶 #encephalitis #awareness #mentalhealth @people @encephalitisinternational https://people.com/woman-29-shares-her-encephalitis-recovery-struggle-you-have-to-learn-this-whole-new-person-exclusive-12140217 the link is in my BIO.

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I taught college Chemistry for 3 years as a licensed chemist, an encephalitis survivor, and a dyslexic learner.

I observed students struggle with text-heavy slides and 2D representations of molecules found in all living things. However, in real life, molecules aren't flat and 2D.

This is why I created Chemphabet. I wanted visual flashcards for Organic Chemistry concepts that come with 3D molecular models. These 3D models are representations that visuo-spatial thinkers can actually picture, experience and understand.

The series are up on our website and on Gumroad. Links in bio. ☺️

#Chemphabet #organicchemistry #chemistry #visuallearning #ChemEd

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