theherd - THE HERD January 2021~ 1st edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis January 2021 1st edition

In this Issue~

  • *Announcements: February AE Awareness Month Guest Speakers, Virtual Art Show, Shop & Support IAES, AE Awareness Month Shirts/new Arrivals at the AE Warrior Store
  • *Children’s Corner: Autoimmune encephalitis in children and adolescents, Happy Jar, Cognitive Exercises and Rehabilitation for All Ages
  • *Most Popular Image Downloads:  Standard Operating Procedure (SOP), AE Infographic Poster
  • *COVID-19’s Impact on the AE Community: Q & A about COVID-19 mRNA Vaccines, COVID-19 vaccine myths debunked
  • *Most Popular Visual: Dementia Warning Signs, Antibodies Associated with Autoimmune Epilepsy
  • *Featured AE Articles: Autoimmune encephalitis: When your body attacks your brain, and people think you’re going mad, Immunotherapy in Probable autoimmune encephalitis without detected autoantibody
  • *Clinician’s Corner: Relationship between serum NMDA receptor antibodies and response to antipsychotic treatment in first-episode psychosis
  • *COVID-19 Clinician’s Corner: Dexamethasone in Hospitalized Patients with Covid-19 — Preliminary Report
  • *Open Access: Pregnancy outcomes in anti-NMDA receptor encephalitis Case series

Announcements

February ~ is AE Awareness Month

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Hear From the Experts

This year we are excited to announce that IAES will be hosting Zoom guest speaker presentations with experts addressing their specific area of focus. 

Belinda Lennox, DM FRCPsych, Professor of Psychiatry at Oxford Neuroscience will be presenting on Autoimmune Psychosis and autoimmune encephalitis. In 2019 Dr. Lennox was made the first woman Psychiatry Professor at Oxford. Dr. Lennox is a member of the IAES Medical Advisory Board.

For 12 years Dr. Lennox has been saying that it is time that all patients with acute-onset psychosis are screened for autoimmune encephalitis. That lumbar puncture should be offered to all patients with new-onset acute psychosis as part of the broader evaluation of their mental and physical health. She has advocated that the time for cultural change in psychiatric practice is upon us.  We encourage you to read  ‘Time for a change of practice: the real-world value of testing for neuronal autoantibodies in acute first-episode psychosis’ and get to know her. 

Michael Sweeney, MD, Pediatric Neurologist assistant professor in the Division of Child Neurology at the University of Louisville, Kentucky will be presenting on Pediatric Autoimmune Encephalitis. He was the first pediatric neurologist to complete an autoimmune neurology fellowship at the University of Utah. Upon joining as faculty at the University of Louisville in 2016, he started the region’s first-ever clinic to treat children specifically with immune-mediated neurologic disorders. He also joined with colleagues in the Department of Neurology to start an adult autoimmune neurology clinic in conjunction with an established neuroimmunology program.

Presentations will be made on separate days. Stay tuned for the finalized dates and times of these presentations. 

3rd Annual Virtual Art Show

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Your participation in our 3rd annual Virtual Art Show is a great way to raise awareness for AE.  Everyone has something they can share that will provide the public with insights into AE.  There are no limits to the type of art you can submit. All art mediums are welcome; still photography, poems, quotes, haiku, a meme you have created, music, pencil, coloring, painting, watercolor, fabric, clay. 

AE patients of all ages, caregivers, and our loved ones touch by AE are all encouraged to submit their expressions to be showcased in the virtual art show. 

Send in your art, multiple submissions are encouraged, with this submission form to IAES@autoimmune-encephalitis.org  If you have several things you are sending in, please make sure you describe what each piece is so the correct story behind the art accompanies your piece. 

Past Shows are located under the ‘Raising AE Awareness’ tab on the IAES website. 

Ways to Shop & Support IAES

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.

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AE Warrior Store New Arrivals

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, humorous hand sanitizer packets ideal for AE patients on immunosuppressant treatments, and an AE Warrior license plate frame.

Visit #AE Warrior Gifts on the IAES website for some great ideas about how you can honor your AE Warrior or Caregiver during AE Awareness month.  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 

Autoimmune Encephalitis in Children and Adolescents


Highly recommended for Parents

Antibody-mediated Autoimmune encephalitides have become an attractive field in neurology because the antibodies are syndrome-specific (a group of symptoms that consistently occur together), explain the pathogenesis (The development of a disease and the chain of events leading to that disease), indicate the likelihood of an underlying tumor, and often predict a good response to immunotherapy. The relevance and the management of antibody-associated encephalitides in the pediatric age group are discussed in this wonderful article.

The list of potentially relevant antibodies that is known today is not yet complete, as the field is still young and there are still reports of new associations from the neuropediatric age range. This review covers when AE should be suspected, how it is evaluated, and ‘possible AE’ when a patient does not have a known antibody.  There are several helpful Tables that list out symptoms/syndromes seen in specific types of AE and how AE is treated that will help parents gleam a much better understanding.

There are no fundamental differences between autoimmune encephalitides in pediatric and adult cases and their management. Neuropediatricians can therefore rely on insights from adult neurology. Therapy follows a first-line (steroids, IVIG, apheresis) and second-line (rituximab, less frequently cyclophosphamide) concept. 


Cognitive Exercises and Rehabilitation for All Ages

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Here is a new set of cognitive rehabilitation worksheets, packet #30. They give AE patients the ability to practice and work on cognitive skills impacted by brain injury caused by autoimmune encephalitis.  Courtesy of our friends at Happy Neuron.

Mental movement is a complex cognitive skill needed in order to plan things out. It not only helps with visual-spatial skills but with the ability to organize information, make mental-visual comparisons, and overall decisions based upon order or comparison. 

 In this worksheet, you receive 4 exercises to use to practice strategies related to mental movement. Whether it’s mentally moving a ball from one hoop to another, remembering where objects are placed, using language clues and space markers to complete a sentence, and/or mentally reflecting a pattern this packet has all of that and more. You will be exposed to different task requirements, all sharing the underlying component of mentally moving objects. This worksheet challenges: working memory, attention, visual-spatial skills, and language. 

Start 2021 with your version on a ‘Happy Jar’


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Because battling autoimmune encephalitis is such a huge challenge, it’s difficult for us to remember the positive things we experience. So, we wanted to share this idea with all of you as a way to help you through difficult times. You can create your own version modeled after this one and, of course, you can dip into the jar and randomly read notes throughout the year when you could use a lift.

Some IAES members have created ‘grateful jars’ filled with what you are grateful for. Parents, family, and friends can fill a jar with notes of encouragement, praise, and comments about accomplishments. Maybe you decide to make a ‘happy memories’ jar. Be creative. You may decide everyone in the family can add to the jar. Think about what you need or your loved one would appreciate and create around that.

Most Popular Download

Standard Operating Procedure (SOP)

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This standard operating procedure (SOP), published earlier this year, is based on existing diagnostic algorithms, treatment recommendations, and personal experiences, this SOP gives an overview of clinical presentation, diagnostic procedures, and therapy in AE.
Additional information is provided within an accompanying text and a table describing the most important autoantibodies and their characteristics.

AE Infographic Poster

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COVID-19’s Impact on the AE Community

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Q & A about COVID-19 Vaccines

Some of the most common questions people are asking about COVID-19 mRNA vaccines are presented in this helpful handout by the vaccine education center at Children’s Hospital of Philadelphia. If you do not see your question, you can submit questions to experts from the Vaccine Education Center at CHOP.

COVID-19 vaccine Myths Debunked

 

Vaccines are perhaps the best hope for ending the COVID-19 pandemic.  Two pharmaceutical companies have recently received emergency use authorization from the Food and Drug Administration (FDA) for new COVID-19 vaccines. 

It’s likely you’ve heard claims about these COVID-19 vaccines on social media or from the people in your life. Also, the rapid development and approval of these vaccines may make you hesitant about safety or effectiveness.

This article by Mayo Clinic sets the record straight on some of the myths circulating about COVID-19 vaccines. The myths covered are: 

·        Myth: COVID-19 vaccines are not safe because they were developed and tested quickly.

·        Myth: COVID-19 vaccines have severe side effects.

·        Myth: I won’t need to wear a mask after I get vaccinated for COVID-19.

·        Myth: More people will die as a result of a negative side effect to the COVID-19 vaccine than would die from the virus.

·        Myth: COVID-19 vaccines were developed to control the population through microchip tracking or “nanotransducers” in the human brain.

·        Myth: COVID-19 vaccines will alter my DNA.

·        Myth: COVID-19 vaccines were developed using fetal tissue.

·        Myth: COVID-10 vaccines cause infertility or miscarriage.

·        Myth: I am allergic to eggs so I shouldn’t get the COVID-19 vaccine

·        Myth: COVID-19 vaccines must be stored at extremely low temperatures because of preservatives in the vaccines.

Most Popular Visual~

 

 

 

 

 

Dementia Warning Signs 

 

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antibodies in autoimmune epilepsy_2018

Featured AE Articles~

Autoimmune encephalitis: When your body attacks your brain, and people think you’re going mad

This easy to read article discusses a four-year long Australian study currently seeking AE patient’s participation. 

The Monif group leads The Australian Autoimmune Encephalitis Consortium Project that consists of up to 13 health and academic centers around the country bringing national experts together to tackle the issue of Autoimmune Encephalitis facing the Australian population.

The study hopes to produce the largest cohort of retrospective and prospective cases of AE in Australia with the aim of gaining a better understanding of disease trajectory as well as identifying key clinical, electroencephalogram/seizure phenotype, cellular and biochemical, radiological & cognitive biomarkers of disease onset, progression & outcome. The study brings together a collaborative & multidisciplinary team of neurologists, neuroimmunologists, epilepsy experts, neuropsychologists, neuroradiologists, psychiatrists, and neuroscientists. The findings are hoped to generate extensive data regarding AE as well as the production of clinical guidelines for early identification, diagnosis & treatment of these devastating conditions.

Immunotherapy in Probable autoimmune encephalitis without detected autoantibody

Are you someone who has AE without an identified antibody?

Along with the rapidly expanding spectrum of autoimmune encephalitis (AE), probable AE with no detected autoantibody (AE-NoDab) has become a major category of AE.

There was no difference in clinical characteristics, treatment, and outcomes among subcategories of AE-NoDab.

Clinician’s Corner

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Relationship between serum NMDA receptor antibodies and response to antipsychotic treatment in first-episode psychosis

Tom Pollak, Ph.D., one of the authors of this paper, was able to give some input into this key study.

“Some authors assume that because these antibodies can cause NMDAR encephalitis, First Episode Psychosis (FEP) patients with these antibodies might be less responsive to antipsychotic treatment or might experience more side-effects. We sought to test this within the tightly-controlled parameters of the OPTiMiSE trial.  Almost 4% of FEP subjects had NMDAR abs. As a group, they had a shorter duration of psychosis, which is curious. But there was NO DIFFERENCE in initial symptom severity OR in response to 4 weeks of amisulpride treatment.  Seropositive patients improved similarly to seronegative. There was also no difference in the frequency of reported AEs in the two groups.

For immunotherapy to even be a consideration, further evidence of active Central Nervous System (CNS) inflammation (including cerebral spinal fluid (CSF) analysis and antibody testing, but also MRI and EEG) is essential. We didn’t perform CSF analysis in this study, but the next priority should be…to figure out what % of patients with serum NMDAR abs also have evidence of CNS inflammation – so far, estimates vary wildly, from 0% to 100% (as in this paper).” 

 

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COVID-19 Clinician’s Corner

 

 

Dexamethasone in Hospitalized Patients with Covid-19 — Preliminary Report

 

CONCLUSIONS

In patients hospitalized with Covid-19, the use of dexamethasone resulted in lower 28-day mortality among those who were receiving either invasive mechanical ventilation or oxygen alone at randomization but not among those receiving no respiratory support.

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Pregnancy outcomes in anti-NMDAr encephalitis

Case series

This new research published by Dr. Dalmau and colleagues reports the effects of anti-NMDA receptor (NMDAR) encephalitis in pregnant patients and their babies.

Conclusions Patients who develop anti-NMDAR encephalitis during pregnancy or become pregnant during recovery often have obstetrical complications, but most of the newborns are healthy and appear to have normal development.

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. 

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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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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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