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March NEWSLETTER

Selected Highlighted News in the field of Autoimmune Encephalitis  March 2019 2nd edition

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Most popular article of the Month: Antibody-Mediated Psychosis Printable booklet, Profile Frame for you FaceBook Picture: Raise awareness globally and easily, Most Viewed/Shared Video of the Month: Traumatic Brain injury: Effects of damage to different lobes of the brain Most Popular IAES Handout: A Letter From Your Brain Open Access: The Expanding Field of Secondary Antibody Deficiency: Causes, Diagnosis, and Management Clinician’s Corner: Prognosticating autoimmune encephalitis: A systematic review IAES Membership Program

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Most popular article of the Month:

An Introduction to the Causes and Treatment of antibody mediated psychosis.  written by experts in the U.K. Study of ImmuNotherapy in

Autoantibody Positive PsychosiS (SINAPPS) features IAES Ambassador, Sarah Galloway. Published in 2016, this valuable booklet is one newer members of the AE community should become aware of.

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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. 

Most Shared Video in April: 

Great 8 minute video on the areas of the brain and their functions.You know the problems you are having in your life living with acquired brain injury from AE. This explains what area of the brain is affected. This talks about TBI – Traumatic Brain Injury. AE gives us an Acquired Brain injury from disease as opposed to an accident. We at IAES Love this video! How has your AE injured you? Watch and see.

Most Popular IAES Handout of the Month:A Letter From Your Brain

(all printable handouts are found on the Living with AE page of our website) 

 

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The Expanding Field of Secondary Antibody Deficiency: Causes, Diagnosis, and Management

Excerpts of interest: “The prevalence of secondary antibody deficiency, which is estimated to be 30 times more common than PAD (12–15), is increasing for a number of reasons. Growth in new therapies for autoimmune, inflammatory, and malignant disease, many targeting B cells, is rapid. It is being increasingly appreciated that the use of such therapies, such as rituximab, alongside high-dose, and long-term steroid treatment, either in combination with other treatments, sequentially over time or as maintenance therapies may contribute to the increased development of iatrogenic secondary antibody deficiency (5, 6). Studies report an increased risk of infection with B cell-targeting drugs such as rituximab or ibrutinib, and with long-term steroid treatment. It is becoming increasingly important to address the unmet needs in this growing patient population, including risk factors for the development of secondary antibody deficiency, improved screening, monitoring, and treatment strategies.” “In neurology, B cell ablation is being increasingly used, for conditions including neuromyelitis optica spectrum disorders, relapsing-remitting multiple sclerosis, myasthenia gravis, autoimmune encephalitis, immune mediated peripheral neuropathies and primary angiitis of the central nervous system, with reports of secondary antibody deficiency consequent upon the use of these agents (129, 130). Clozapine, a drug used in treatment-resistant schizophrenia, has been associated with an increased incidence of pneumonia and death from infection. It has also recently been found to be associated with secondary antibody deficiency, as demonstrated by levels of IgG, IgA, and IgM below the reference range in 8.5%, 13.8%, and 34% of patients, respectively.”

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Clinician’s Corner

Prognosticating autoimmune encephalitis: A systematic review

 From Australia – A systematic review of the current scientific literature in order to identify variables associated with patient prognosis in autoimmune encephalitis.

 Highlights

•This review examines predictive variables of prognosis in autoimmune encephalitis.

•Delayed immunotherapy is associated with a wide variety of poor outcomes.

•Some variables had clear associations with outcomes only in anti-NMDAR encephalitis.

•The associations of several other variables with outcomes are unclear

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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.

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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