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.
AE SYMPTOMS
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.
AE IS REFRACTORY TO ANTI-PSYCHOTIC MEDICATION
“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
RECOVERY AND RELAPSE
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.
WHAT IS AE
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.
LIVING WITH BRAIN INJURY
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.
A LETTER FROM YOUR BRAIN
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.
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.
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 in the Hat on Autoimmune Encephalitis
Recommended Reading
In Sickness and In Health
In Sickness and In Health: A Story of Love, Strength, and Faith
by Wesley Thompson
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
Brain on fire
Brain on fire: My month of madness
by Susannah Cahalan
Glowing After the Darkness
by Hannah Leasure
The Girl on the 6th Floor
The Girl on the 6th Floor: Wide Awake Through the Nightmare
by Brian Nichols
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.
Flooding
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?
Encephalitis...it 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
Supportive Articles:
For Friends and Family~ Easily organize meals for the person who is ill
Food Tidings, Where you can organize meals for friends in need
Caring Bridge~ allows you to share medical updates & people can sign up for errands or chores
