theherd - THE HERD April 2020~ 1st edition

Don’t Be Left Behind. Keep Up With THE HERD!

Selected Highlighted News in the field of Autoimmune

Encephalitis April 2020 1st edition

In this Issue~

 

    •  Announcements: IAES to assist PBS with documentary, Autoimmune Encephalitis Trivia Cards On Sale, New website section addressing COVID-19 prevention, #StrongerTogether Mental Health/Emotional support and key articles that impact you directly
    • COVID-19 video: Dr. Sanjay Gupta how to disinfect groceries
    • Most Popular Visual of the Month:  COVID-19 vs. Allergies vs. Flu vs. Colds
    • Most Popular Video for Children of the Month:  Elmo of Sesame Street teaches children to wash their hands
      • Clinician’s Corner: Use of Hydroxychloroquine and Chloroquine during the COVID-19  Pandemic: What every Clinician should know

      • Open Access:   Autoimmune Encephalitis in children and adolescents
    PBS Mental illness documentaryupdate April 1 2020 - THE HERD April 2020~ 1st edition

    PBS is interested in speaking to adults (18+) who were initially diagnosed with mental illness, perhaps even institutionalized, before their anti-NDMA autoimmune encephalitis was discovered. From PBS’ perspective, ideal candidates will have videos or audio recordings of their journey (personal phone recordings, hospital/ diagnostic videos or other documentation of their symptoms and/or treatment) so we can visualize your story. The process will involve some back and forth via email/ phone to get to know potential subjects and their stories over the next few weeks. We’d love to hear from you. 

     

     

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    Autoimmune Encephalitis Trivia playing cards is the first product in the world designed to educate patients, therapists, caregivers, teachers, and friends about autoimmune encephalitis and act as an important patient rehabilitation tool all in one. AE experts around the world have shared their excitement about this product and how it can help patients.

    Created by Tabitha Orth, IAES President and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE), AE Trivia cards answers the most common questions about AE. 

    Autoimmune Encephalitis Trivia cards are a vital educational/rehabilitation tool specifically designed to support AE patients, caregivers, loved ones, therapists and teachers.  Each set includes 52 cards, 2 Jokers, an information card and an instruction booklet. Cards contain questions and answers to the most common questions patients ask about the disease covering diagnosis, symptoms, treatment, and recovery.  

    AE trivia cards double as a rehabilitation tool for cognitive and memory loss challenges from brain injury. Through the repetition of playing, the user receives an outstanding educational foundation about AE that empowers them. Color coding is used to support lower baselines and children’s games.

    As re-learning/re-training the brain advances from color and number matching and memory games, other suggested games outlined in the accompanying booklet can be utilized.  AE trivia addresses brain functions such as long- and short-term memory, attention level, reading, reasoning skills, and cognition. 

    Family members, caregivers, and loved ones also benefit by learning about AE through the questions and answers provided on the cards.  Therapists and Teachers can incorporate the cards in their rehabilitation programs or student educational goals.

    AE Trivia cards are on sale to the public at the introductory low price of $15 per deck. 

    You can now follow us on Instagram at intl_ae_society for educational and entertaining  visual information.

    Dr. Sanjay Gupta- How to disinfect your groceries

     

     

     

    Most Popular Visual of the Month

     

     

     

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    IAES takes pride in keeping our community up-to-date with the latest news in the field of autoimmune neurology and topics that directly impact our lives. As the leading organization in the AE community for patients and families, the community depends on us to provide the best information in times of strife. 

    To assist you through the COVID-19 pandemic, IAES has created three vitally important new website pages for you which are easily located on our menu. 

     

     

     

     

    Most Popular Video of the Month

    Sesame Street: Washy Wash Song | How to Wash your Hands

     

     

     

     

    Watch this video together and sing along as you wash your hands. Talk with children about the importance of hand-washing—it helps keep us healthy and it helps keep germs away! Act out the steps of hand-washing and then practice together.

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    Clinician’s Corner

    Use of Hydroxychloroquine and Chloroquine During the COVID-19 Pandemic: What Every Clinician Should Know

    The looming public health crisis for people with rheumatic diseases who will be unable to obtain HCQ is the result of a perfect storm of fear and dissemination of overpromised data. However, there is still time to mitigate the damage. Physicians should educate themselves about the strength of available data regarding HCQ and CQ in treating COVID-19. They should avoid misuse of HCQ and CQ for the prophylaxis of COVID-19, because there are absolutely no data to support this. Public figures should refrain from promoting unproven therapies to the public, and instead provide clear messages around the uncertainties we face in testing and using experimental treatments during the current pandemic, including the risk for serious adverse events. Well-done, randomized clinical trials should be performed urgently to test potential therapies, including HCQ. In the meantime, physicians should remember that first, we must do no harm to the patients with rheumatic disease for whom high-quality evidence shows that HCQ improves health.

     

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    Autoimmune Encephalitis in children and adolescents

    Most neuropediatric cases of autoimmune encephalitis harbor NMDAR antibodies in CSF. Cases with other antibodies occur. The frequency of MOG antibodies in pediatric encephalitides remains to be determined; it might be higher than known today. The existing data justify the use of multiparametric testing for neural antibodies at disease onset in serum and CSF with panel diagnostic through biochips. There are no fundamental differences between autoimmune encephalitides in pediatric and adult cases and their management.

     

     

     

     

    baC - THE HERD April 2020~ 1st 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.

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    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.

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    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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    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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