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theherd - THE HERD September 2021 2nd edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ September 2021 2nd Edition

In this Issue~

 

  • *Announcements: The Well-Being Gratitude Journal, #AETuesdayTries & Growing Your Resilience Organizer, AE Study in Australia, New Engagement Program for Patients and Caregivers
  • *Children’s Corner (for all ages): The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses, A Child Therapist’s Favorite Resources for Calming Anxiety in Children
  • *ABI Rehabilitation: 7 Surprising Ways Puzzles Are Good for Your Brain
  • *Helpful Tips for the AE Warrior: Anxiety in the Classroom is an online resource center for school personnel, students, and their families, Frequently Asked Questions
  • *Most Popular Visual Downloads: Aphasia Fact Sheet, Before and After Brain Injury
  • *COVID-19’s Impact on the AE Community: Neurological Complication in Pediatric Patients with SARS-CoV-2 infection: a systematic review of the literature, Mix-and-Match COVID Vaccines Trigger Potent Immune Response
  • *Featured AE Article: Thyroid antibodies: the end of an era?, Why Did You Spill the Coffee? 
  •  *Clinician’s Corner Video: Autoimmune Encephalopathy evaluation: Why be comprehensive? 
  • *COVID-19 Clinician’s Corner: Long COVID-mechanisms, risk factors, and management 
  • *Open Access: Neuropsychological Evaluations in Limbic Encephalitis
  • *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
  • *AE Warrior Store: See our new AE Wingman and hat collections
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Annoucements

 

The Well-Being Gratitude Journal

 

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IAES is pleased to provide you with this wonderful supportive tool appropriate for anyone touched by Autoimmune Encephalitis. This guided gratitude journal is a science-based practice for improving your health and happiness. The Well-Being Warrior Journal, written by Tessa McKenzie, IAES Chief Resilience Officer, and Tabitha Orth, IAES President, prompts you to reflect on what you are grateful for each day.  

Utilize the journal by challenging yourself to a 21-day commitment described. Spend two minutes a day scanning the world for three new things you’re grateful for over a 21-day period.  We instinctively scan our environment for threats. This powerful exercise trains your brain to scan the world in a new pattern of scanning for positives. It’s the fastest way to teach optimism.

 We are all capable of learning new behaviors and changing our brain patterns. Research has shown that a person with a low-level of pessimism on day 1 of this 21-day exercise will admit to feeling a low-level of optimism by day 21. When dealing with a life challenge as overwhelming as AE, it is important to take care of your mental health, feel supported in your ability to manage the crisis and feel empowered and truly resilient.   

The Journal has a left-hand margin width for a 3-hole punch, so it can be inserted into a notebook. Coloring has been shown through research to mitigate symptoms of physical and emotional distress and is a recommended rehabilitation activity for AE patients. Color in the cover design to personalize your journal while relaxing into a pleasant past time. 

#AETuesdayTries

 

Our new program “Tuesday Tries” addresses the emotional support and rehabilitation AE patients and caregivers require in recovering from Autoimmune Encephalitis by building your resilience. The program utilizes science-based exercises from the work of PERMA; Seligman, 2012.  

IAES wants to foster your capacity in the belief that better days are ahead! “Tuesday Tries” is about practicing a strengths-based approach by “normalizing the try;” celebrating critical milestones in the recovery and care of AE patients and caregivers in order to build a more resilient network of care. 

A workbook organizer, “Growing Your Resilience” has been created to accompany the #AETuesdayTries program and is located on the ‘Apps and Tools for AE Warriors’ page in the section: ‘Building Your Resilience’ on the IAES website under the ‘For Patients’ tab. A link to download the organizer is also provided within your e-mail confirmation when you register.

The next monthly #AETuesdayTries zoom meet-up will take place September 28th and will always be the last Tuesday of each month.  Join AE patients and caregivers of all ages and stages in their AE journey.  Receive insights and encouragement from others and celebrate your critical milestones in recovery and care while  building a more resilient personal AE network!

Your facilitator, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab. Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins” and opportunities for relationship building.

AE Study Seek Your Participation

Dr Mastura Monif-Victoria-Australia

AE Study Seeks Your Participation

Dr. Mastura Monif, a member of the IAES Medical Advisory board who is located in Australia, is conducting a study on Autoimmune Encephalitis and seeks patient 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 group has formed The Australian Autoimmune Encephalitis Consortium bringing together national experts from 4 states around the country to tackle the issue of AE facing the Australian Health sector. With this study, they hope 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. This 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.

E-mail Dr. Monif regarding Study Participation

 

Patient Engagement Group

 

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Here’s your opportunity to let your voice be heard and advocate for a better future for AE patients and caregivers. Participation is encouraged no matter where you are in the world. 
The Monif Group in Australia is beginning a community engagement program where they hope to engage with members of the public from around the world who have a lived experience of Autoimmune Encephalitis, either as a patient or a caregiver, and form partnerships with researchers within their school.
These valuable partnerships provide them with a unique perspective on the health conditions they research, and allow patients/carers to contribute to a shared goal of improving outcomes for patients with Autoimmune Encephalitis. It is intended that the program facilitates engagement between consumers and researchers in a flexible, respectful way. This means that the process is largely guided by the consumers, including on their terms, within their available schedules and within the scope of what they are comfortable to contribute.

If anyone would like to be involved they can either email NeuroimmunologyResearch@monash.edu or you can complete an expression of interest on this form. contact Tiffany Rushen, the research coordinator for the project, if you have any questions.

Children’s Corner

 

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The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses

 

Being a Caregiver for a child with a rare disease or other serious medical condition can be both enormously gratifying and extremely challenging. For most, the experience is life-altering, and for some, all-consuming. In particular, the long and winding diagnostic odyssey and daily complexity of navigating care, treatment and support services can be overwhelming. Rare Caregivers often must advocate for equitable and timely access to diagnostic testing, medical specialists, trials and the latest treatments, and become experts in their disease, researchers, innovators and entrepreneurs, organizers, fundraisers, policy wonks and thought leaders – sometimes all simultaneously — while being loving and available partners, parents and siblings. The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other Caregivers and experts. The extensive array of topics covered in this Guidebook (nearly 100) underscores the many aspects of life and care that are impacted when caring for a child with a rare disease. Fortunately, there are a wide variety of helpful resources and organizations available to support and direct Caregivers, many of which are also highlighted in this document.

A Child Therapist’s Favorite Resources for Calming Anxiety in Children

 

Inside: Kid tested strategies used by child therapists for calming anxiety, including ideas to calm down, books to read and videos that can help. Deep breathing strategies including downloadable printable.

ABI Rehabilitation From AE

 

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7 Surprising Ways Puzzles Are Good for Your Brain

 

We all know that puzzles are incredibly beneficial for children because of the physical and cognitive brain skills they foster but did you know that adult brains can benefit from puzzles too?

There are seven specific ways that puzzles are good for your brain. So, clear off your coffee table, sharpen your pencils and get ready to boost your mind.

You may have noticed that IAES has several free AE themed word searches and puzzles on the Rehabilitation/Cognitive exercise page of our website.  The AE Warrior Store has puzzles showcasing the original art by fellow AE Warriors.  Find your next puzzle challenge  and get started today.

Helpful Tips for Patients & Families

 

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Anxiety in the Classroom is an online resource center for school personnel, students, and their families

 

This website provides useful information, resources, and materials about anxiety and OCD as they relate to the school setting. In addition, it offers specific tools for teachers, administrators, and other school personnel who may work with students with anxiety and/or OCD. Parents and students can also find tools and information to help them advocate for school accommodations, as well as to educate their teachers and classmates about OCD and anxiety.

Frequently Asked Questions

 

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IAES has taken your most frequently asked questions and created a new section on our website that is dedicated to answering them in detail. Now you can learn quickly and access the information that concerns you most based on where you are in your AE journey. Simply go to the red button menu on the Home page.

Education is power and can allow you to feel in more control, ease your mind and assist you in having more productive conversations with your doctor and improve your ability to advocate for yourself or your loved one.

Most Popular Download

 

Aphasia Fact Sheet

 

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Aphasia is a language disorder affecting at least 2 million Americans that impairs the ability to produce or comprehend speech, along with the ability to read or write. It can result from any injury or disease that damages the language centers of the brain, including autoimmune encephalitis (AE).
There are many different types of aphasia, ranging from mild forms that involve occasionally struggling to find the right words, to much more severe forms that limit nearly all forms of communication. The level of aphasia varies dramatically from patient to patient, with each person having his or her own unique language difficulties.  This handout will help you better understand the problems you or your AE Warrior experiences and why. Aphasia does improve with rehabilitation. 
You can find other helpful AE handouts and factsheets on the IAES website under the ‘For Patients’ tab on the IAES website.  

Before and After Brain Injury

 

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Covid-19

COVID-19’s Impact on the AE Community

 

Neurological complications in pediatric patients with SARS-CoV-2 infection: a systematic review of the literature

Highlights the large range of neurological manifestations and their presumed pathogenic pathways associated with SARS-CoV-2 infection in children. Nervous system involvement could be isolated, developing during COVID-19 or after its recovery, or arise in the context of a MIS-C. The most reported neurological manifestations are cerebrovascular accidents, reversible splenial lesions, GBS, benign intracranial hypertension, meningoencephalitis; ADEM is also a possible complication, as we observed in our patient. Further studies are required to investigate all the neurological complications of SARS-CoV-2 infection and their underlying pathogenic mechanism.

Mix-and-match COVID Vaccines Trigger Potent Immune Response

Preliminary results from a trial of more than 600 people are the first to show the benefits of combining different vaccines.

Vaccinating people with both the Oxford–AstraZeneca and Pfizer–BioNTech COVID-19 vaccines produces a potent immune response against the virus SARS-CoV-2, researchers conducting a study in Spain have found.

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Featured AE Article~

 

Thyroid antibodies: the end of an era? 

This scientific commentary refers to Brain dysfunction and thyroid antibodies: autoimmune diagnosis and misdiagnosis’, by Valencia-Sanchez et al.

In the interest of our patients, we must recognize the new evidence that demonstrates that the diagnostic utility of thyroid antibody testing is limited in the evaluation of autoimmune neurologic conditions. Its role is, at best, limited to demonstrating a potential propensity to systemic autoimmunity. Cessation of thyroid antibody testing in the evaluation of suspected autoimmune encephalitis and encephalopathy will hopefully reduce harm from misdiagnosis and unwarranted treatment, and minimize financial toxicity related to unnecessary interventions.

Why did you spill the coffee? 

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We love this analogy:

You are holding a cup of coffee when someone comes along and bumps into you or shakes your arm, making you spill your coffee everywhere.

Why did you spill the coffee?

“Because someone bumped into me!!!”

Wrong answer. You spilled the coffee because there was coffee in your cup. Had there been tea in the cup, you would have spilled tea. *Whatever is inside the cup is what will spill out.* 

Therefore, when life comes along and shakes you (which WILL happen), whatever is inside you will come out. It’s easy to fake it, until you get rattled.

*So we have to ask ourselves… “what’s in my cup?”* When life gets tough, what spills over? Joy, gratefulness, peace and humility? Anger, bitterness, harsh words and reactions? Life provides the cup, YOU choose how to fill it.

Today let’s work towards filling our cups with gratitude, forgiveness, joy, words of affirmation; and kindness, gentleness and love for others.

Clinician’s Corner

 

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Autoimmune Encephalopathy Evaluation: Why be Comprehensive?  

Just released ~

As more antibodies in autoimmune encephalitis have been identified and with the increased knowledge about this group of diseases, Sean Pittock, M.D., reviews how Mayo Clinic has updated their antibody panel evaluations and put them in phenotype-specific categories so more patients will be identified and testing will be more targeted, efficient and more cost effective for the patient. He also discusses the role paraneoplastic testing can play to avoid delays in diagnosing and improving efficiency for the laboratory. Proper utilization of the phenotype-specific test menu improves specificity, offers physicians a definitive diagnosis, and shortens the patient’s journey.

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COVID-19 Clinician’s Corner

 

Long COVID- mechanisms, risk factors, and management

Since its emergence in Wuhan, China, covid-19 has spread and had a profound effect on the lives and health of people around the globe. As of 4 July 2021, more than 183 million confirmed cases of covid-19 had been recorded worldwide, and 3.97 million deaths. Recent evidence has shown that a range of persistent symptoms can remain long after the acute SARS-CoV-2 infection, and this condition is now coined long covid by recognized research institutes. Studies have shown that long covid can affect the whole spectrum of people with covid-19, from those with very mild acute disease to the most severe forms. Like acute covid-19, long covid can involve multiple organs and can affect many systems including, but not limited to, the respiratory, cardiovascular, neurological, gastrointestinal, and musculoskeletal systems. The symptoms of long covid include fatigue, dyspnea, cardiac abnormalities, cognitive impairment, sleep disturbances, symptoms of post-traumatic stress disorder, muscle pain, concentration problems, and headache. This review summarizes studies of the long term effects of covid-19 in hospitalized and non-hospitalized patients and describes the persistent symptoms they endure. Risk factors for acute covid-19 and long covid and possible therapeutic options are also discussed.

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Neuropsychological Evaluations in Limbic Encephalitis 

Memory issues continue after Limbic encephalitis, particularly long term forgetting, and issues related to executive function. This article urges that neuropsychological testing done prior to treatment can give a baseline. A comparative neuropsychological evaluation can then be repeated after treatment is completed and after rehabilitation.  This provides a good baseline of where the patient’s functioning level was at the beginning and the progress made after treatment and rehabilitation. This also helps to identify areas that need continued work/rehabilitation.

Limbic encephalitis (LE) can negatively affect cognition, mood and behavior. On
the cognitive level, LE is primarily associated with different variants of mostly subacute episodic long-term memory dysfunction but also with impairments in attention and executive functions. On the behavioral level, patients with LE often show altered affective states, but other and partially severe psychiatric symptoms have been described as well. Cognition, affect and behavior can recover after immunomodulatory treatment as long as no persistent structural damage has been induced.

An evidence-based neuropsychological baseline assessment for supporting the diagnosis of LE should ideally be conducted before treatment initiation. Repeated assessments for demonstrating disease- or treatment-related disease dynamics should become an essential part of the diagnostic workup of patients with evident or suspected limbic encephalitis. Therefore, neuropsychology contributes to the diagnosis of LE, it is an important outcome parameter for monitoring the course of the disease and the success of therapeutic
interventions, and therewith may guide treatment decisions.

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

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Doctor Recommended

 

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. 

AE Warrior Store

 

New Arrivals ~ The AE Wingman Collection

 

New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection.  Get some  swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey.

Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey.

The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health.

Don’t forget to #GiveAtCheckOut if you purchase your gift through PayPal! (See: Shop and Support IAES Through PayPal’s #GiveAtCheckOut program below).

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.

Shop & Support IAES Through PayPal’s 

#GiveATCheckOut

 

Have you wanted to support IAES, Autoimmune Encephalitis awareness, and the AE Warrior that you love?

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 of an opportunity to give $1 to IAES.

Simply go to your PayPal account and select “set favorite charity”, and choose International Autoimmune Encephalitis Society.  When you make a purchase and check out, an option comes up that asks if you would like to give $1 to IAES? 

Help create the positive change you envision for the AE Community by donating your change.

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Get that great deal online and support IAES at the same time!

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.

This simple act of kindness, will support the work we do and advance our ability to service the community.

Smilematic, 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.

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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

Autoimmune Encephalitis Trivia Playing Cards

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