IAES ribbon - Living-with-autoimmune

Living with
Autoimmune Encephalitis


Helpful downloads

The IAES poster may be printed and distributed (ie. hospitals, doctor’s office, clinics, etc.) to raise awareness of Autoimmune Encephalitis through the social media avenues IAES provides.

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Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major

challenge in diagnosis is that different symptoms may appear at different

times and different levels of intensity, so that the disease may mimic many other disorders.

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“Autoimmune Encephalitis is refractory
to antipsychotics; indeed, antipsychotic agents make affected patients much
worse, even to the point of developing something akin to neuroleptic
malignant syndrome.”
– Dr. Josep Dalmau

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For all types of autoimmune encephalitides, promptimmunotherapy has been associated
with a favorable outcome; spontaneous clinical improvement is infrequent.
The frequency of clinical relapse in the encephalitides associated with
antibodies against NMDAR, AMPAR, LGI1, CASPR2, or DPPX ranges
from 12 to 35%. Relapses often occur when immunotherapy is reduced or discontinued.

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Antibody Mediated Autoimmune Encephalitis (Encephalopathy) is a
rare disease that can be progressive or relapse-remitting. It is caused when the immune system makes
auto-antibodies that are not
supposed to be there.

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If you are an AE Warrior or you love and/or care for an AE Warrior
working toward recovery, know
that no matter the frustration,
no matter the time, no matter
the severity
– there is hope for improvement.

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I’m glad to see that you are awake!
This is your brain talking. I had to find some way to communicate with you.
I feel like I barely survived WWIII and
am still not quite all in one piece. That’s
why I need you. I need you to take care
of me.

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Anti-NMDAr Encephalitis Fact Sheet


The major role of our immune system is to recognize and get rid of infection. But sometimes some components of the immune system, called antibodies, may instead react with proteins in
our own body causing an autoimmune disease. When this reaction is against proteins in the brain it is called autoimmune encephalitis. If the brain protein is the N-methyl-D-aspartate (NMDA) receptor, the condition is termed NMDA-receptor antibody encephalitis, or anti-NMDAR encephalitis.

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Benefits of Cognitive Excersises for AE Patients


Cognitive exercises are a great way to improve and preserve cognitive function after an Acquired Brain Injury (ABI). Here are some of the best cognitive exercises for ABI you can do at home to sharpen your mental skills. Just like how your body needs exercise to stay healthy, your brain needs to stay active in order to preserve function and recover from brain injury. Stimulating your brain through activity causes more neurons to fire, which helps keep your brain operating properly.

The Cat and the Hat - Living-with-autoimmune

The Cat in the Hat on Autoimmune Encephalitis


IAES PNK Partnership logo - Living-with-autoimmune

IAES/PNK Partnership Handouts

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The “Immune” in Autoimmune Encephalitis: The role of T and B Cells


When we catch a cold, get an infection, or otherwise become sick, our bodies use a natural defense mechanism called the immune system to fight off what’s attacking us. The immune system has two ways of responding1. The first, called innate immunity, involves physical and chemical barriers like the skin and saliva, as well as many different types of cells that “eat” and destroy whatever is causing the trouble. While this innate response happens very quickly, then downside is that it’s not very specific, and the immune cells can damage healthy parts of the body while trying to gobble up the foreign invaders. In order to specifically target particular offenders, the body uses its second way of responding: the adaptive immune system.

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Sleep and the Blood Brain Barrier (BBB)


Circadian rhythms aren’t the only daily process that affects the integrity of the BBB. Sleep—or more appropriately, lack of sleep—is also known to affect the BBB’s protection of the brain. This relationship between sleep and the BBB is increasingly important as sleep restriction becomes more and more common in our modern society.

Recommended Reading

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In Sickness and In Health

In Sickness and In Health: A Story of Love, Strength, and Faith
by Wesley Thompson

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Abide in Me

Abide in Me: A daughter’s illness, a father’s struggle, and a reminder that the miraculous isn’t just a thing of the past
by Chris Slaughter

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Brain on fire

Brain on fire: My month of madness
by Susannah Cahalan

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Glowing After the Darkness

by Hannah Leasure

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The Girl on the 6th Floor

The Girl on the 6th Floor: Wide Awake Through the Nightmare
by Brian Nichols

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The Brain's Way of Healing

The Brain’s Way of Healing
Norman Doidge-Penguin Random House

Videos: Understanding a friend with Autoimmune Encephalitis

Age Activated ADD

Showing how our memory loss affects us.

Mad Hatter

Member Luka Hooper singing Mad Hatter by Melanie Martinez.

Song Fraction

By member Donny Eozzo

Introduction to Brain Injuries

An introduction to Brain injuries

Virtual Dementia Tour

Experience what it is like to live with memory loss

Invisible Illness & Brain Injury

Invisible Illness & Brain Injury Awareness

Like I'm gonna lose you

Mackenie Smithson, 15, shares her AE Journey. A must watch

Breathe through HE

Member Lizzie Kehr, 14, speaks of her AE in song and pictures

Brain Injury Awareness

What it is like to live with brain injury

Over Stimulation

The effects of over-stimulation after a brain injury

Neuro Fatigue

 The effects of neuro fatigue after a brain injury.


Video from the Northern BRAIN INJURY Association.

A survivor of viral encephalitis

EG Kight and The Blue South Band – Holdin’ On

The Dance

IAES member, Matt Willette would do anything for his daughter, but would his recent diagnosis of AE let him fulfill a promise he made her so long ago? happened to me - World Encephalitis Day 2015

This short film highlights the impact of Encephalitis (inflammation of the brain) on individuals and families. The Encephalitis Society works with those affected by this devastating condition providing support, raising awareness and collaborating on research

Flooding - Sensory Ove-rstimulation with brain injury

What sensory over-stimulation feels like. It was made by someone who experiences sensory over-stimulation every day, due to bad filtering caused by brain damage.  

Why the Simple task like Grocery Shopping seems like Mission Impossible

Different forms of over-stimulation and coping tools by Nathalie

Why you get so cranky, irritated and overwhelmed

Different forms of over-stimulation and coping tools by Nathalie

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2013 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.




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