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World Encephalitis Day

Special Edition

Selected Highlighted News in the field of Autoimmune

Encephalitis  March 2019 2nd edition

SPECIAL WORLD ENCEPHALITIS DAY (WED), EDITION ~ FEB-22nd

 Free AE Warrior Treatment Companion Kit: with IAES membership dated 2-22-19, WED FaceBook Profile frame, Tour: our Virtual Art Show,Videos“You Are the Reason” WED AE Awareness, Dr. Sarosh Irani, WED message WebinarRehabilitation therapy. iPAD/iPhone AppGoodRx app, Clinician’s Corner Open Access:The prevalence and treatment outcomes of antineuronal antibody-positive patients admitted with first episode of psychosis, and The Psychopathology of NMDAR-antibody encephalitis in Adults: A systematic review and phenotypic analysis of individual patient data

International Autoimmune Encephalitis Society has just launched a Membership Program in time for World Encephalitis Day.

You can now become a card carrying Member of IAES and support our mission through a membership pledge. All submissions for membership dated February 22nd, will receive this free AE Warrior Treatment Companion Kit  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.

Get your Advocacy on for World Encephalitis Day by adding one of these profile frames to your FaceBook picture. Use #RED4WED, #WED, #IAES on February 22nd. Don’t forget to wear something RED to show your support!

Tour IAES’ First Annual Virtual Art Show in recognition of World Encephalitis Day (WED) this February 22nd, 2019. These poignant pieces of Art are accompanied by information about the artist and what the artist would like you to know about the work. In some cases, the artist had no drawing ability but experienced ‘an awakening’ of artistic talent attributed to the changes that occurred  in the brain due to autoimmune encephalitis.

You Are the Reason

 IAES’ 3rd annual video that shines a light on Autoimmune Encephalitis in recognition of World Encephalitis Day February 22, 2019.  We invite you to watch and share this video with friends and family and post it on all your social media platforms. Each share raises awareness and helps our message reach suffering patients who are undiagnosed or misdiagnosed and the Physicians who come in contact with them.  A carefully written description accompanies the video that provides enough information to ensure a full neurological work up ensues for these patients.   Your ‘share’ may be one that saves another life. IAES has purchased the rights to the song: You Are the Reason by J. Blanks

World Encephalitis Day video message from Dr. Sarosh Irani, head of the Oxford Autoimmune Neurology Group.  Discusses his work and research and how he sees the field of Autoimmune Encephalitis evolving. Special thanks to our friends at AE Alliance for making this video available. 

Special KUDOS to IAES member Francisca Grol who has raised   £70,000 to go toward Dr. Irani’s research efforts! Well done Fran!

World Encephalitis Day Webinar, brought to you by our friends at Encephalitis 411,  may help you improve your quality of life. Did you or a loved one get sent home without rehabilitation therapy options? Do you know what the difference between occupational, speech, cognitive therapy and physical therapy? As an example, speech therapy helps with aphasia (not finding words). If you were sent home without a plan, this webinar may help you improve your quality of life. Learn more #aboutencephalitis 

Submit a question for the therapy speaker here or text 1.833.411.3350

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. 

 

 

 

Clinician’s Corner

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

Just published February 11th:

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.

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

 

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.

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.

nternational 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”.

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. Tax ID# 81-3752344 Donations raised directly supports patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world.

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