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the herd newsletter logo bi monthly - THE HERD September 2019~ 2nd edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis September 2019 2nd edition

In this Issue~

  • Announcements: Award winning publisher donates proceeds for new comic book to IAES, Update on IVIG shortage
  • IAES turns 3: Become an IAES Angel
  • Most Popular Article of the Month: FAQs Friday: Is antibody Negative AE treated differently than AE with an identified antibody?
  • Most Popular Video of the Month: Mental Status Exam
  • STUDY Needs Your Participation: Understanding Consequences of Encephalitis
  • Most Shared Post: How the brain functions with a Healthy Brain Vs an Injured Brain
  • Most Popular quote: I think You Are Brave
  • Clinician’s Corner: Plasma exchange in neurological disease
  • Open Access:  Neurological autoimmune disorders with prominent gastrointestinal manifestations: A review of presentation, evaluation, and treatment
oncefuture finest hour - THE HERD September 2019~ 2nd edition

In 2013, Brian Donnelly, when his wife was a few weeks pregnant with his first child,  learned he had a brain tumor, epilepsy and autoimmune encephalitis, an extremely rare condition where the body’s immune system mistakenly attacks healthy brain cells. He underwent brain surgery when his wife was five months pregnant with their first daughter and seven months of immuno-infusion therapy.

It was during his recovery that he decided to pursue a passion he had since the 1980s. He formed a comic book publishing company, Mythographer’s Workshop to create professional creative works and donate proceeds to worthwhile charities. 10% of the proceeds for ONCE AND FUTURE FINEST HOUR, will be donated to INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY!


IVIG donate plasma IAES CALL TO ACTION SHORTAGE - THE HERD September 2019~ 2nd edition
baC - THE HERD September 2019~ 2nd edition

Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure?  The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.

IAES Angels are motivated by their Spirit of giving.  They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use. 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

Most Popular Article of the Month~

FAQ Friday 1 - THE HERD September 2019~ 2nd edition

QUESTION: Is antibody Negative AE treated differently than AE with an identified antibody?

First let’s clarify what Antibody Negative Autoimmune Encephalitis is to avoid confusion.

As described in A Clinical Approach to Diagnosis of Autoimmune Encephalitis published in 2016
Criteria for autoantibody-negative but probable autoimmune encephalitis
Diagnosis can be made when all four of the following criteria have been met:

1. Rapid progression (less than 3 months) of working memory deficits (short-term memory loss), altered mental status, or psychiatric symptoms

2. Exclusion of well-defined syndromes of autoimmune encephalitis (eg, typical limbic encephalitis, Bickerstaff’s brainstem encephalitis, acute disseminated encephalomyelitis)

3. Absence of well characterized autoantibodies in serum and CSF, and at least two of the following criteria:
• MRI abnormalities suggestive of autoimmune encephalitis*
• CSF pleocytosis, CSF-specific oligoclonal bands or elevated CSF IgG index, or both*
• Brain biopsy showing inflammatory infiltrates and excluding other disorders (eg, tumor)

4. Reasonable exclusion of alternative causes

Once diagnosis with standard tests (example, MRI, CSF, or EEG studies) and clinical presentation outlined above have been determined, doctors begin immunotherapy treatment. There is no difference in treatment protocol from a patient with an identified antibody Vs a patient with an unidentified antibody.
Clinical facts and evidence suggest that early immunotherapy improves outcome. Therefore, experts in autoimmune neurology emphasize that the treating doctor not wait for antibody testing results to come back, as this can take 10 days. Using this approach, allows the initiation of preliminary treatment while other studies and comprehensive antibody tests are processed and subsequently used to refine the diagnosis and treatment. In addition, because not all antibodies in AE have been identified, the patient does not need a positive antibody test to confirm the diagnosis.
The goal of immunotherapy is to provide maximum response, reducing nervous system inflammation and decreasing symptoms, maintain improvements by preventing relapses, and minimize side effects. Following antibody titers in the management of patients has several limitations and rarely helps guide therapy, which should be based on clinical findings as titers are not reliable markers of disease severity, but they can sometimes predict relapses and support the use of prolonged immunotherapy for prevention.
The kind of immunotherapy used for a patient is based on the labs run by taking samples of the patient’s blood and the patient’s clinical condition. Patients with antibodies with a cancerous tumor, onconeural antibodies, can have limited response to immunotherapy but can stabilize with tumor removal. Immunotherapy can be tried with often limited success. In addition to immunotherapy, other important aspects of the treatment include supportive care, particularly in the inpatient setting, symptomatic therapy (seizures, spasms, neuropsychiatric symptoms) and rehabilitation.


Most Popular Video of the Month~

This 36 minute video goes over the Mental Status Exam that all patients receive. It’s extremely valuable to understand what the doctor is accessing. Not only does it help you as a patient or caregiver, it helps you understand the the doctor is doing his due diligence.
We highly recommend you take the time to view this.



KEEP CALM complete this survey - THE HERD September 2019~ 2nd edition
The survey will take approximately 15 minutes to complete.
This study is being led by Dr. Venkatesan at Johns Hopkins University in collaboration with Dr. Yeshokumar at the Icahn School of Medicine at Mount Sinai.
We would like to invite all IAES encephalitis patients to participate in a study which surveys for symptoms following encephalitis/AE.
While Autoimmune encephalitis may result in the development of a number of persistent symptoms, these have not been well studied. A better understanding of the persistent symptoms in people affected by Autoimmune encephalitis may lead to the development of targeted therapeutic and rehabilitation measures to enhance function and quality of life.
This study will include patients between 18 – 84 years of age who are diagnosed with any form of encephalitis.

Most Liked and Shared IAES Post

How the Brain Functions with a Healthy Brain Vs an Injured Brain

This helpful chart is a valuable one.
It breaks down the areas of the brain and how they function and correlates that with symptoms we have when our brain is injured in that area as it is with Autoimmune Encephalitis.



brain function brain injury - THE HERD September 2019~ 2nd edition

Most Popular Quote

I think you are brave most popular - THE HERD September 2019~ 2nd edition
image 20 - THE HERD September 2019~ 2nd edition

Clinician’s Corner

Plasma exchange in Neurological Disease

 Plasma exchange is a highly efficient technique to remove circulating autoantibodies and other humoral factors rapidly from the vascular compartment. It was the first effective acute treatment for peripheral disorders such as Guillain-Barré syndrome and myasthenia gravis before intravenous immunoglobulin became available. The recent recognition of rapidly progressive severe antibody-mediated central nervous system disorders, such as neuromyelitis optica spectrum disorders and anti-N-methyl-D-aspartate-receptor encephalitis, has renewed interest in using plasma exchange for their acute treatment also. In this review we explain the principles and technical aspects of plasma exchange, review its current indications, and discuss the implications for its provision in the UK.


image 15 - THE HERD September 2019~ 2nd edition

Neurological autoimmune disorders with prominent gastrointestinal manifestations: A review of presentation, evaluation, and treatment

Just published-Review of antibody-associated neurological disorders that may present with isolated GI symptoms. These require a high index of suspicion to diagnose early, but can result in dramatic improvement with treatment. 

Gastroenterologists should consider an autoimmune disorder of the nervous system in patients with severe, unexplained GI presentations that are refractory to conventional treatments. Neurological deficits may be subtle or absent early in disease course; thus, a multi‐disciplinary approach with neurologists, gastroenterologists, and other specialists may be necessary for effective treatment and monitoring. Prompt identification and treatment can lead to marked improvement in symptoms and outcomes.

mission2 - THE HERD September 2019~ 2nd edition

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may be reached. Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

seal2 - THE HERD September 2019~ 2nd edition

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 


Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

image 23 - THE HERD September 2019~ 2nd edition

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 2016 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.




Autoimmune Encephalitis Trivia Playing Cards

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