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THE HERD September 2019~ 1st edition

the herd newsletter logo bi monthly - THE HERD September 2019~ 1st edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis September 2019 1st edition

In this Issue~

  • IAES turns 3: Become an IAES Angel
  • Most Popular Article of the Month: Music Therapy of brain injury
  • Most Popular Video of the Month: Chelsea Chisholm’s presentation of her own experience with anti-NMDAr encephalitis
  • STUDY Needs Your Participation: Understanding Consequences of Encephalitis
  • Most Shared Post: Symptoms in AE
  • Clinician’s Corner: Comparison between auto-antibody negative and auto-antibody positive Autoimmune Encephalitis patients
  • Open Access:  CFS findings in Patients with Autoimmune Encpehalitis- A systematic Analysis

The IAES Angel has 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.

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~

Doctors Now Prescribing Music Therapy for Brain Dysfunction, Learning Disabilities, Depression, PTSD, Alzheimers and More

Though traditional “music therapy” encompasses a specific set of practices, the broader use of music as a therapeutic tool can be seen nowadays as doctors are found recommending music for a wide variety of conditions. When it comes to the human brain, music is one of the best medicines.

Most Popular Video of the Month~

In our Feature: *Throw Back Thursday* On September 5th, 
IAES threw you back to Feb 28, 2013. Your response gave this video a standing ovation! 

If you are recently diagnosed or have had a diagnosis for a while – this is a ‘must watch’ video!
Gather Family & Friends and have the popcorn ready. This is a 2 hour presentation will keep your attention and will have you learning more than you could have imagined watching Chelsea take you through her harrowing experience with anti-NMDAr encephalitis.
Chelsea Chisholm, as a nursing student, presented her personal case history of Anti-NMDA Receptor Encephalitis. She warns that health care members need to be more aware of this condition, as a misdiagnosis can be fatal to the patient.


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

Symptoms in Autoimmune Encephalitis

This image refers to the more common symptoms seen in Autoimmune Encephalitis. The antibody the immune system is making can target many structures in the central nervous system (spinal cord and brain) and peripheral nervous system which results in a diverse clinical presentation. Said another way, how we can observe the symptoms affecting the patient. Symptoms also fluctuate, come and go (relapse/remit is the medical term). This makes it difficult for doctors to diagnose and often results in misdiagnosis.



Clinician’s Corner

Clinical, radiological and laboratory comparison between autoantibody-negative and autoantibody-positive Autoimmune Encephalitis patients.

Recognition of AE is important because patients may benefit from several lines of immunomodulatory treatment, which is more effective as soon as it is started.

 This research looked at 18 patients with identified antibodies in AE and 14 who were antibody negative. They did not find any significant differences between the two groups.

Conclusions: AE-patients show similar features if compared to AE+ patients, except for autoantibody detection. As outlined by recent guidelines, our work suggests that, if clinical picture is highly suggestive for AE, antibody detection is not mandatory for diagnosis and, therefore, immunomodulatory treatment must not be delayed.



Cerebrospinal Fluid Findings in Patients With Autoimmune Encephalitis-A Systematic Analysis

The authors systematically reviewed the literature about the 10 most important AE subtypes, AE with antibodies against NMDA, AMPA, glycine, GABAA , and GABAB receptors as well as DPPX, CASPR2, LGI1, IgLON5, or glutamate decarboxylase (GAD), with respect to the reported basic CSF findings comprising CSF leukocyte count, total protein, and the presence of oligoclonal bands (OCB) restricted to the CSF as a sensitive measure for intrathecal IgG synthesis.

Our results indicate that these basic CSF findings are profoundly different among the 10 different AE subtypes. Whereas, AEs with antibodies against NMDA, GABAB , and AMPA receptors as well as DPPX show rather frequent inflammatory CSF changes, in AEs with either CASPR2, LGI1, GABAA , or glycine receptor antibodies CSF findings were mostly normal. Two subtypes, AEs defined by either GAD, or IgLON5 antibodies, did not fit into this general pattern. In AE with GAD antibodies, positive OCBs in the absence of other changes were typical, while the CSF in IgLON5 antibody-positive AE was characterized by elevated protein.

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.

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.

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