theherd - THE HERD December 2020~ 2nd edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis December 2020 2nd edition

In this Issue~

  • *Announcements: Shop & Support IAES, AE Awareness Month Shirts/New Arrivals at the AE Warrior Store
  • *Children’s Corner: Effectiveness of Mycophenolate Mofetil in the Treatment of Pediatric Anti-NMDAR Encephalitis, Holiday Word Scramble Puzzles, Official Memo to Kris Kringle 
  • *Most Popular Image Downloads:  User-friendly Chart – Understanding AE in the ICU, AE Infographic Poster
  • *COVID-19’s Impact on the AE Community: Antibodies, Immunity & COVID-19, COVID-19 and the Brain: An Update, NMDA-receptor encephalitis Associated with COVID-19 infection in a toddler
  • *Most Popular Visual: IAES’s Christmas List to Santa, So Few People Understandproduction
  • *Featured AE Articles: Search for Viral Infections in Cerebrospinal Fluid From Patients With Autoimmune Encephalitis, LGI1 Antibody Encephalitis: Treatments and Long-term Outcome
  • *Clinician’s Corner: Glucocorticoids: surprising new findings on their mechanisms of actions
  • *COVID-19 Clinician’s Corner: FDA Takes Key Action in Fight Against COVID-19 By Issuing Emergency Use Authorization for First COVID-19 Vaccine, Fact Sheet contradictions/warnings
  • *Open Access: Neurocritical care for Anti-NMDA receptor encephalitis

Announcements

Ways to Shop & Support IAES

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Have you wanted to support IAES, autoimmune encephalitis awareness, and the AE Warrior that you love?

Have you found our services helpful? Do you want to make sure patients are identified early and that they and their loved ones receive the best help possible during this difficult journey?

Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded that you can give $1 to IAES.

black friday shop amazon smiles

While shopping online via Amazon Smiles, you can support your favorite non-profit and get that great deal online!

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

Here is a handy tool that will automatically redirect you to smile.amazon.com when you are shopping so you never have to worry about forgetting to type it in to ensure benefits go to IAES. 

AE Warrior Store

Description: Autoimmune Encephalitis Awareness Month, February 2021 2-sided designs. May be ordered in Men’s, Women’s, and Children’s sizes in a variety of styles including a hoodie, long sleeve shirts, and colors.

Back reads: Autoimmune Encephalitis (AE): is a type of brain inflammation where the body’s immune system attacks healthy brain cells.

Spread awareness with these stylish shirts. Wearing this shirt may begin a conversation that could lead to saving a life. The proceeds of your purchase will immediately support autoimmune encephalitis patients, caregivers, and families who are walking this difficult journey. Proceeds also go to support research that may one day lead to a cure.

Other new arrivals are an AE Warrior What’s Your Superpower shirt with zebra art by Julia King and a pocket-sized password log.

Visit #AE Warrior Gifts on the IAES website for some great stocking stuffer ideas, many offerings there are free. Don’t forget to get a deck of AE Trivia Cards for your AE Warrior, family members, or your Neurologist.

 

Children’s Corner 

Effectiveness of Mycophenolate Mofetil in the Treatment of Pediatric Anti-NMDAR Encephalitis: A Retrospective Analysis of 6 Cases


Objective: To explore the effectiveness and safety of mycophenolate mofetil (MMF) as a second-line medication in the treatment of anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis, the most common and severe autoimmune encephalitis.

Results: Six children with anti-NMDAR encephalitis were treated with MMF in the 2nd or 3rd treatment disease event (3 cases vs. 3 cases). MMF initiation was mean 19.2 months (range 6–39 months) after disease onset at a mean dose of 25.6 mg/kg (range 19.6–28.4 mg/kg) for 14 months (range 6–26 months). Only two patients had transient mild diarrhea within 2 weeks of MMF application. During follow-up, one patient relapsed whilst on MMF, one patient discontinued MMF, and 4 cases were still on MMF.

Conclusion: The use of MMF in anti-NMDAR encephalitis may be effective and safe. MMF can be used as one of the relapse prevention options in patients who already have relapsed or possibly even after the first event. Delayed use may be the main reason for MMF failure.

Christmas Word Scramble puzzles for Cognitive Exercise and Rehabilitation

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This Christmas themed word scramble, titled ‘Christmas Gift’, is rated ‘hard’. Word Scramble puzzles are a wonderful exercise to do for brain injury rehabilitation from AE. These word scramble worksheets are a great activity to help AE patients of all ages develop their problem solving and analytical skills. These Christmas word scramble worksheets feature holiday words to unscramble and a picture to color. This word scramble is printable. The word list is provided at the bottom of the worksheet so you can check your answers.

Puzzles offered at this link range from easy>medium level of difficulty>hard>super hard.

Other rehabilitation/educational activities provided at this link are coloring pages, connect the dots, crafts, crossword puzzles, maze worksheets, pattern worksheets, story starters, sudoku puzzles, word decoders, and word scrambles.

Official Memo To Santa

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Most Popular Download

User-friendly Chart – Understanding AE in the ICU

AE_patient friendly chart_Understanding AE in ICU_R Sonneville_2_IAES permission

AE Infographic Poster

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Covid-19

COVID-19’s impact on the AE Community

Antibodies, Immunity, and COVID-19

 


In summary, a robust and well-designed seroprevalence study using residual serum samples from across the US has found that herd immunity to SARS-Cov-2 is nowhere in sight, even as the COVID-19 pandemic has raged on for a year. The good news is that the limited number of reinfections of SARS-CoV-2 to date, and the experience with natural infections with other viruses, suggests that protective immunity to COVID-19 should result, a harbinger for the success of vaccines. The bad news is that, like the 1918 influenza pandemic, achieving herd immunity through natural infections will take years of painful sacrifice that are tallied in numerous deaths, severe long-term health sequelae, and widespread economic disruption and hardship. Let us hope that safe and effective vaccines help avoid the consequences of naturally developing herd immunity to COVID-19, as they have reliably done for so many other respiratory viruses. 

NMDA-receptor encephalitis Associated with COVID-19 infection in a toddler

 

 

This case is by Dr. Michael Sweeney, a member of our medical advisory panel.

There have been two cases of anti-NMDAR encephalitis associated with SARS-CoV-2 in adults reported.

Both patients showed significant recovery following immunotherapy with steroids and IVIG. At the time of publication, the authors are unaware of other cases of anti-NMDAR encephalitis with recent SARS-CoV-2 infection in pediatric populations. As the understanding of both the neurological and non-neurological manifestations of SARS-CoV-2 in children are evolving, we report a child with SARS-CoV-2-associated anti-NMDAR encephalitis. 

COVID-19 and the Brain: An Update

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COVID-19 continues to spread around the world at an alarming rate. When we first wrote about neurologic complications from COVID-19 on June 30th, just under 10 million people had been infected globally. As of the writing of this post less than 5 months later, 12 million people have been infected in the United States alone, with over 58 million infections worldwide. Normally, one would not expect any major scientific advancements in 5 months on a single topic. These are not normal times, however, and the massive push to study this disease by scientists around the world has led to an outpouring of research on how SARS-CoV-2 might affect the brain. Here we will provide an update on what has been found and the big questions that still need to be answered.

Most Popular Visual~

 

 

 

 

 

IAES’s Christmas List to Santa

 

 

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Featured AE Articles~

Search for Viral Infections in Cerebrospinal Fluid From Patients With Autoimmune Encephalitis


Results:

Autoantibodies against neuronal cells were detected in CSF from 8 individuals (4% of all encephalitis patients): 7 (3.5%) had anti-NMDAR and 1 (0.5%) had anti-GABA B. RT-PCR/PCR identified human herpesvirus type 1 (HSV-1; 300 copies/mL) and the representative of Enterovirus genus (550 copies/mL) in 1 patient each. Torque Teno virus (TTV) was found in another patient using metagenomic analysis, and its presence was confirmed by specific PCR.

Conclusions:

We detected the presence of HSV, TTV, and Enterovirus genus in CSF samples from 3 out of 8 AE patients. These findings support the concept of viral involvement in the pathogenesis of this disease.

 

LGI1 Antibody Encephalitis: Treatments and Long-term Outcome

The Mayo Clinic Rochester, MN did a study over 11 years with 122 AE patients with LGI1.

Conclusions: Corticosteroids appeared to be more effective acutely than IVIG in improving LGI1 antibody encephalitis in this retrospective comparison of immunotherapies. While improvement with immunotherapy is frequent, most patients have residual long-term memory deficits.

Clinician’s Corner

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Glucocorticoids: surprising new findings on their mechanisms of actions

 

Glucocorticoids are highly effective drugs that are used very widely to inhibit inflammation and to modulate the immune system. Their great importance in the treatment of various rheumatic diseases is undisputed. However, although their introduction into clinical medicine was more than 70 years ago, we have understood only a fraction of their mechanisms of action. Detailed in Table 1. However, our understanding of glucocorticoid-mediated immunoregulation still has substantial gaps, not only but especially regarding the effects of glucocorticoids in specific cell types and their key cellular targets in particular disease states, and the actions these hormones broadly induce in cells and tissues versus those that are unique to the immune system.

In this 2019 paper, Immune regulation by glucocorticoids can be linked to cell type-dependent transcriptional responses, the authors report that glucocorticoid effects are highly dependent on cell type with regard to the regulation of genes and signaling pathways. They found methylprednisolone to induce cell-specific differences in the expression of more than 9000 unique genes or ∼17% of the human transcriptome. These results lead to a fundamentally new mechanistic understanding of the effects of glucocorticoids.

The 2020 study, Local steroid activation is a critical mediator of the anti-inflammatory actions of therapeutic glucocorticoids is certainly of great importance. It reveals a completely new, previously unknown component of the anti-inflammatory effect of glucocorticoids, namely and concisely, that systemically inactivated glucocorticoid molecules are peripherally reactivated by the enzyme, 11beta-HSD1 to induce profound anti-inflammatory effects.

It is to be hoped that a deepening of the knowledge gained with regard to glucocorticoid treatment and the proof of its relevance to clinical medicine will in the future lead to a further improvement in the therapeutic options for treating patients with rheumatoid arthritis, and other rheumatic and inflammatory diseases, ultimately leading to a better benefit-risk ratio.

 

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COVID-19 Clinician’s Corner

 

 

FDA Takes Key Action in Fight Against COVID-19 By Issuing Emergency Use Authorization for First COVID-19 Vaccine

 

December 11, 2020, the U.S. Food and Drug Administration issued the first emergency use authorization (EUA) for a vaccine for the prevention of coronavirus disease 2019 (COVID-19) caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) in individuals 16 years of age and older. The emergency use authorization allows the Pfizer-BioNTech COVID-19 Vaccine to be distributed in the U.S.

FACT SHEET FOR HEALTHCARE PROVIDERS ADMINISTERING VACCINE

“Contraindications, Do not administer Pfizer-BioNTech COVID-19 Vaccine to individuals with a known history of a severe allergic reaction (e.g., anaphylaxis) to any component of the Pfizer-BioNTech COVID-19 Vaccine (see Full EUA Prescribing Information).

Warnings Appropriate medical treatment used to manage immediate allergic reactions must be immediately available in the event an acute anaphylactic reaction occurs following administration of Pfizer-BioNTech COVID-19 Vaccine.

Immunocompromised persons, including individuals receiving immunosuppressant therapy, may have a diminished immune response to the Pfizer-BioNTech COVID-19 Vaccine. Pfizer-BioNTech COVID-19 Vaccine may not protect all vaccine recipients”.

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Neurocritical care for Anti-NMDA receptor encephalitis

 

 

Highly recommend

This article summarizes the presentation of anti-NMDAr autoimmune encephalitis in young adults and children. It discusses the stages and course that the disease often follows in the intensive care unit

In this review, we summarize the clinical presentations of the acute stage of anti-N-methyl-d-aspartate (NMDA) receptor encephalitis and the neurocritical care strategy in intensive care units. Anti-NMDA receptor encephalitis has characteristic clinical features and is predominantly seen in young adults and children. Most patients have five stages of clinical presentation, including a prodromal phase, psychotic and/or seizure phase, unresponsive and/or catatonic phase, hyperkinetic phase, and gradual recovery phase.

AE Trivia Playing Cards

The perfect companion for patients, Caregivers & Therapist

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Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

Shop on line amazon Smiles FB - THE HERD December 2020~ 2nd edition

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.

baC - THE HERD December 2020~ 2nd 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.

mission2 - THE HERD December 2020~ 2nd edition

International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency.  IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344

Donations raised are greatly appreciated and directly support research, patients, caregivers, and families through their journey so the best outcomes can 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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