Living with
Autoimmune Encephalitis
Helpful downloads
These posters may be printed and distributed (ie. hospitals, doctor's office, clinics, etc.) to raise awareness of AE and provide access to our sites.
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This pro-active preparedness resource guide for Autoimmune Encephalitis Patients and Caregivers is designed to assist you in managing your care. Addresses how to navigate the challenges and pitfalls encountered when diagnosed with an under recognized disease that presents with psychiatric symptoms. A ‘Must Have’ companion guide for ALL in the community.
First Aid Toolkit for AE
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 SYMPTOMS
“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
AE IS REFRACTORY TO ANTI-PSYCHOTIC MEDICATION
For all types of autoimmune encephalitides, prompt
immunotherapy 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.
RECOVERY AND RELAPSE
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.
WHAT IS AE
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.
LIVING WITH BRAIN INJURY
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.
A LETTER FROM YOUR BRAIN
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.
Anti-NMDAr Encephalitis Fact Sheet
Recommended Reading
Videos: Understanding a friend with Autoimmune Encephalitis
Tools for Crisis
Management
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
Perfect gifts and ways to support a friend or family member with a serious illness
No more repeating the story over and over. Connect with all of your family and friends at once, giving you time to focus on what matters. Create a Personal Health Journal now
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