theherd - THE HERD July 2020~ 1st edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis July 2020 1st edition

In this Issue~

 

    •  Announcements: AE Warrior Store opens, AE Trivia Playing Cards hailed by Clinicians
    • Children’s Corner: Lunch Doodles with Mo Willems!
    • Most Popular Visual of the Month: A Day in the Life of an AE Warrior Sunday Comic Strip
    • Most Popular APP: Peak-Brain Training APP
    • COVID-19’s Impact on the AE Community: COVID-19 and Postinfection Immunity, Dexamethasone Hailed as ‘Breakthrough’ in COVID-19 Trial, Reduced Deaths  
    • Clinician’s Corner: SOP: antibody-associated autoimmune encephalitis
    • COVID-19 Clinician’s Corner: American Academy of Neurology, Headache May Predict Clinical Evolution of COVID-19, Headache May Predict Clinical Evolution of COVID-19
    • Open Access: Anti-NMDA receptor encephalitis associated with ovarian tumor: the gynecologist point of view
AE Warrior Store

The CDC and WHO have updated their recommendations for face mask-wearing. New evidence shows that wearing face mask protection results in a large reduction of COVID-19 transmission and protects the wearer. Prior information was that wearing a mask protected others you came in contact with if you were asymptomatic.

It is especially important for people at increased risk of severe illness from COVID-19, AE patients are in this group, and those who live with them, to protect themselves from contracting the virus. 

Given that a percentage of the public has made mask wearing political, IAES has designed several 3-ply masks that alert the public to the fact that you have AE and are at high risk.  Whether you wear a mask that reads ‘#AEWarrior’ or ‘High Risk’, you are bound to receive added respect for your situation. 

In order to add a level of additional protection, we have designed t-shirts and a hat that any family member or loved one can wear signaling ‘high risk’ to COVID-19 infection. The goal is that we assist in keeping you and your family safe. 

 

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Our excitement continues to build over the rave reviews we are receiving from experts in the field about our AE Trivia playing cards. Doctors have begun to provide decks to their patients and have been receiving smiles all around.

The support patients have been reporting is so exciting and gratifying to hear. This simple educational and rehabilitation tool appears destined to be the greatest personal support any AE patient, caregiver, therapist, teacher or medical professional can own.

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

 

 

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

Children’s Corner

 

 

 

 

Lunch Doodles with Mo Willems!

 

 

 

 

lunch-doodles

Kennedy Center Education Artist-in-Residence at Home
Mo Willems invites YOU into his studio every day for his LUNCH DOODLE. Learners worldwide can draw, doodle and explore new ways of writing by visiting Mo’s studio virtually once a day for the next few weeks. Grab some paper and pencils, pens, or crayons and join Mo to explore ways of writing and making together. If you post your art to social media, be sure to hashtag it with #MoLunchDoodles!

New episodes will be posted each weekday at 1:00 p.m. ET and then remain online to be streamed afterwards.

Most Popular Visual

A Day in the Life of an AE Warrior Sunday Comic Strip

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A few months ago IAES  launched a Sunday Comic Strip called ‘A Day in the Life of an AE Warrior’. It gained instant popularity among members as a humorous educational tool to aid in understanding autoimmune encephalitis and what it is like to live with AE.

Visit our AE Memes to view all of our published comic strips to date. 

 

Covid-19

COVID-19’s impact on the AE Community

Covid-19 and Post-Infection Immunity- Limited evidence, Many Remaining Questions

Existing limited data on antibody responses to SARSCoV2 and related coronaviruses, as well as one small animal model study, suggest that recovery from COVID19 might confer immunity against reinfection, at least temporarily. However, the immune response to COVID-19 is not yet fully understood and definitive data on post infection immunity is lacking.


Dexamethasone Hailed as ‘Breakthrough’ in COVID-19 Trial, Reduced Deaths


 

 

 

 

LONDON (Reuters) – A cheap and widely-used steroid called dexamethasone,  has become the first drug shown to be able to save lives among COVID-19 patients in what scientists said is a “major breakthrough” in the coronavirus pandemic.

Trial results showed dexamethasone, which is used to reduce inflammation in other diseases such as autoimmune encephalitis, reduced death rates by around a third among the most severely ill of COVID-19 patients admitted to the hospital.

The preliminary results suggest the drug should immediately become standard care in patients with severe cases of the pandemic disease said the researchers who led the trials.

“This is a (trial) result that shows that if patients who have COVID-19 and are on ventilators or are on oxygen are given dexamethasone, it will save lives, and it will do so at a remarkably low cost,” said Martin Landray, an Oxford University professor co-leading the trial, known as the RECOVERY trial.

England’s chief medical officer, Chris Whitty, said this finding was “the most important trial result for COVID-19 so far”, adding: “It will save lives around the world.

 

Most Popular APP of the Month

Peak-Brain Training APP


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Games are designed to push you hard with short, intense workouts designed around your life. Challenge the skills that matter to you most with games that test your Focus, Memory, Problem Solving, Mental Agility, and more.

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Clinician’s Corner

SOP: antibody-associated autoimmune encephalitis

This standard operating procedure (SOP) should draw attention to the clinical presentation of AE, support the diagnostic approach to patients with suspected AE and guide through the necessary steps including therapeutic decisions, tumor screening and exclusion of differential diagnoses.

 

 

COVID-19 Clinician’s Corner

American Academy of Neurology



COVID-19 Neurology Resource Center for the latest COVID-19 articles, webinars, videos, and podcasts.

 

Headache may predict Clinical Evolution of COVID-19

Much like the mechanisms that make placebo treatments work, we know that provider warmth and competence are positively associated with health at the biological level. Personal protective equipment (PPE) signals competence; portraits could be one of the only signals of warmth for patients who have, or may have, COVID-19. PPE Portraits are disposable portrait picture stickers (4×5 inches) put on PPE that can help patients and providers form a personal connection to positively impact patient health.

 

 



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Anti-NMDA receptor encephalitis associated with ovarian tumor: the gynecologist point of view

We recommend that all women share this article with their OB-GYN to spread awareness for anti-NMDAr AE.

Objectives: Primary objective of our work was to present a review in a very schematic and practical way for gynecologists, about the data on anti-NMDAr encephalitis in terms of epidemiology, clinical symptomatology, treatment and prognosis. The second objective was to propose a decision tree for gynecologists to guide them, in collaboration with neurologists and anesthesiologists, after the diagnosis of NMDAr encephalitis associated with an ovarian mass.

Conclusion: Anti-NMDA antibody encephalitis should not be ignored by gynecologists whose role in management is central. Ovarian teratoma is common, especially in women of reproductive age. Complementary examinations in search of an ovarian teratoma must, therefore, be systematic to envisage a possible surgical excision that may improve patient prognosis.

 

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During the COVID-19 pandemic, it is vitally important that you #StayHome and practice #SocialDistancing. Grocery shopping, as well as all shopping, should be done online.

When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate 5% of our purchases to the International Autoimmune Encephalitis Society.

The need for our services has increased exponentially. This simple act of kindness, will support the work we do and advance our ability to service the community.

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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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