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March NEWSLETTER

Selected Highlighted News in the field of Autoimmune Encephalitis  March 2019 1st edition

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IAES Membership Program, Events: March 20th Podcast – Pediatric MOG Antibody-Associated Disease and ADEM Most popular article of the Month: Jacksonville teen battles through anti-NMDAr encephalitis, Profile Frame for you FaceBook Picture: Raise awareness globally and easily, iPAD/iPhone AppGoodRx app, Clinician’s Corner Double Header: The Psychopathology of NMDAR-antibody encephalitis in Adults: A systematic review and phenotypic analysis of individual patient data, The prevalence and treatment outcomes of antineuronal antibody-positive patients admitted with first episode of psychosis

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International Autoimmune Encephalitis Society has just launched a Membership Program:  

You can now become a card carrying Member of IAES and support our mission through a membership pledge.  A stunning membership card has been artfully designed for each category. There are 5 distinct membership categories: Basic, Sustaining, Leadership Circle, Gold and Life Time. Additionally, IAES will be sending a small thank you gift that has been specifically chosen for each category, as a token of our appreciation for your pledge of support.

Event: Wednesday, March 20, 2019 at 12 PM – 1 PM EDT

Podcast – Pediatric MOG Antibody-Associated Disease and ADEM

Hosted by Transverse Myelitis Association

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Most popular article of the Month:

Jacksonville teen battles through encephalitis

 

In September 2017, Shuronda Hester was an 18-year-old student at Tallahassee Community College with plans to transfer to Florida State University.  In honor or World Encephalitis Day, February 22nd, she recently opened up about her journey through the disease, anti-NMDAr encephalitis, that left her hospitalized for more than two months. A video of a local new report accompanies the article.

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IAES FaceBook Profile Frame: 

Let the world know about Autoimmune Encephalitis and where they can find help and information by using this profile frame.  Your participation helps us spread awareness and directs people to the information they need. 

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GoodRX app: GoodRx is the #1 free medical app for iOS and Android. Save up to 80% on your prescriptions with the free GoodRx app

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Clinician’s Corner

The Psychopathology of NMDAR-antibody encephalitis in Adults: A systematic review and phenotypic analysis of individual patient data

N-methyl-D-aspartate receptor (NMDAR)-antibody encephalitis is an autoantibody-mediated disease that typically presents with psychiatric features before progressing to seizures, a complex movement disorder, autonomic dysfunction, and hypoventilation. Two identified triggers are an underlying ovarian teratoma and herpes simplex virus encephalitis.

Observational evidence consistently associates earlier administration of immunotherapies with improved outcomes. Conversely, delays in distinguishing this disorder from a primary psychiatric syndrome can have serious consequences, with a mortality of up to 25% in patients receiving limited or delayed immunotherapy.
Additionally, certain psychotropic medications can worsen symptoms and patients with NMDAR-antibody encephalitis have a lower threshold for neuroleptic malignant syndrome.

These psychopathological features could help psychiatrists identify patients who would benefit from cerebrospinal fluid testing and immunotherapies.

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Clinician’s Corner

The prevalence and treatment outcomes of antineuronal antibody-positive patients admitted with first episode of psychosis:  

Leading expert in AE, Dr. Irani, of Oxford, in commenting about this paper said: “These patients appeared to have bone fide AE, with teratomas/ CSF NMDAR-antibodies, and were recognized on psychiatry wards. We need a clinical pattern for psychiatrists to recognize, to focus Lumbar Punctures.”

 

 This Open Access paper is exactly what IAES is conveying to be of the utmost importance in raising awareness of AE in the Psychiatric community in our World Encephalitis Day video!

This study suggests a small but significant proportion of people unwell enough to require admission to hospital for their First Episode of Psychosis (FEP), have an illness arising from an autoimmune aetiology and respond to immunotherapy. This study supports recent recommendations for routine antineuronal antibody testing as screening for autoimmune encephalitis in patients admitted with FEP. 

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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.  Raising awareness of Autoimmune Encephalitis across the many specialties of medicine that come in contact with these disorders and with the general public to ensure a timely and accurate diagnosis resulting in an aggressive treatment plan for best outcomes.

“Empowering victims of Autoimmune Encephalitis and their caregivers through Support and Education”.

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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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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