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theherd - THE HERD October 2021 1st edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ October 2021 1st Edition

In this Issue~

 

  • *Announcements:  FAQs, The Well-Being Gratitude Journal#AETuesdayTries & Growing Your Resilience Organizer 
  • *Children’s Corner (for all ages): Psychiatric Phenotypes of Pediatric Patients With Seropositive Autoimmune Encephalitis, Road Trip From Home Virtual Field Trips
  • *ABI Rehabilitation: Verbal Memory Cognitive Therapy Worksheets
  • *Helpful Tips for the AE Warrior: Health at a glance form for AE Warriors
  • *Most Popular Visual Downloads: AE Shows You Two Things Very Clearly, I Think It’s Brave
  • *COVID-19’s Impact on the AE Community: The Impact of COVID-19 on Cognition
  • *Featured AE Article: Seasonal Variation in Autoimmune Encephalitis: A multi-center retrospective study 
  •  *Clinician’s Corner: Unique neurologic symptoms lead to surprising cancer diagnosis 
  • *COVID-19 Clinician’s Corner: Clinical and radiological features of severe acute respiratory syndrome coronavirus 2 meningo-encephalitis 
  • *Open Access: Autoimmune Encephalitis–Related Seizures and Epilepsy: Diagnostic and Therapeutic Approaches
  • *AE Trivia Cards:  The single most important educational/rehabilitation tool for AE
  • *Study: AE Study in Australia
  • *AE Warrior Store: See our new AE Wingman and hat collections
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Annoucements

 

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.

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 October 26th 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.

Children’s Corner

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Psychiatric Phenotypes of Pediatric Patients With Seropositive Autoimmune Encephalitis

OBJECTIVES Patients with Autoimmune Encephalitis (AE) often present with symptoms that are broadly characterized as psychiatric or behavioral, yet little attention is given to the precise symptomatology observed. We sought to more fully define the psychiatric symptoms observed in patients with anti–N-methyl-D-aspartate receptor (NMDAR), anti–glutamic-acid-decarboxylase 65 (GAD65), and anti–voltage-gated-potassium-channel complex (VGKC) antibody-mediated AE using the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition nomenclature.

Psychiatric symptoms were seen in 92% of the 225 patients evaluated in this cohort.

CONCLUSIONS The psychiatric phenotype of AE in children is highly heterogenous. Involving psychiatry consultation services can be helpful in differentiating features of psychosis and catatonia, which may otherwise be misidentified. Patients presenting with psychiatric symptoms along with impairments in other domains should prompt a workup for AE, including testing for all known antineuronal antibodies.

Road Trip from Home: Virtual Field Trips

 

Are you interested in doing a lot of exploring, but don’t often have the opportunity? Let’s face it; parents don’t always have the time to take the family on long field trips. Some destinations, such as other countries throughout the world, may take weeks and can be very expensive. When you can’t go globe-trotting, sometimes you have to get creative and let your mind do the exploring. This is where virtual field trips become a great alternative. These are fun and wonderful websites that will show you different parts of the world, famous landmarks, beautiful works of art, historic marvels, science adventures and so much more!

ABI Rehabilitation From AE

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Verbal Memory Cognitive Therapy Worksheets

 

In this worksheet, you will find four exercises that will help build the foundations of and practice strategies to help the AE patient with brain injury improve their performance on tasks requiring verbal memory. 

Helpful Tips for Patients & Families

 

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Health At A Glance Form for AE Warriors 

 

IAES has designed an Emergency AE Health form for AE Warriors that is specific to your needs. A one-page health record to list medical conditions, allergies, medications, immunizations, Doctor contact information that can be kept in your wallet.

You can find this form along with two other free tools, our AE Patient Emergency Medical Alert I.D. card, and our Autoimmune Encephalitis I.D. card which alerts to behavioral AE symptoms  on the back of the card.

All three tools are located on the Apps and Tools for AE Warriors on the IAES website.

Most Popular Download

AE Shows You Two Things Very Clearly 

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I Think It’s Brave

 

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Covid-19

COVID-19’s Impact on the AE Community

The Impact of COVID-19 on Cognition

The COVID-19 pandemic brought about new challenges across all components of the medical field. Clinical providers are learning about how COVID-19 has impacted the brain in survivors. Severe cases of COVID-19 have resulted in neuropsychological impairments. Jawant et al. (2021) studied 57 recovered patients from a New York City hospital.  This article elaborates on the study and what researchers have uncovered regarding the impact of COVID-19 on cognitive functioning.

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Featured AE Article~

Seasonal Variation in Autoimmune Encephalitis: A multi-center retrospective study

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Clinician’s Corner

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Unique Neurologic Symptoms Lead to Surprising Cancer Diagnosis

A team of scientists from Mayo Clinic and two other institutions published a study in 2019 that identified a new antibody in AE that showed the existence of an autoimmune disorder that affects men. The disorder causes the immune system to attack the brain, causing severe neurologic symptoms.

That’s what happened to a Florida man, and his search for answers led him to experts at Mayo Clinic.

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COVID-19 Clinician’s Corner

Clinical and radiological features of severe acute respiratory syndrome coronavirus 2 meningo-encephalitis

This case illustrates for the first time the clinical and radiological evolution of SARS-CoV-2 meningo-encephalitis. A case of a SARS-CoV-2 meningo-encephalitis is reported. A 65-year-old man with COVID-19 presenting with meningo-encephalitis without respiratory involvement is described. He had fever, diarrhea and vomiting, followed by diplopia, urinary retention and sleepiness.

CONCLUSION This case illustrates the clinical and radiological evolution of SARSCoV-2 meningo-encephalitis. It also demonstrates the challenges in diagnosing COVID-19 in patients with predominantly neurological presentations.

Read on to see what the examination disclosed.

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Autoimmune Encephalitis–Related Seizures and Epilepsy: Diagnostic and Therapeutic Approaches

The identification of neural autoantibodies in patients with new-onset seizures of unknown etiology has led to the concept of Acute symptomatic seizure secondary to autoimmune encephalitis (ASSAE) and Autoimmune-associated epilepsy (AAE). In these patients, antiseizure medications (ASM)-resistant seizures occur as an early and prominent feature. When combined with other symptoms suggestive of immune-mediated seizures, urgent consultation with neurology is recommended. Early treatment with immunotherapy can drastically alter the course of the disease. First-line immunotherapies include intravenous steroids, intravenous immunoglobulin, and PLEX. In the case of insufficient response, cyclophosphamide and rituximab can be considered appropriate second-line treatments. Treatment also includes adjunct ASM therapy and non-CNS tumor resection (if paraneoplastic etiology is suspected) when found on screening.

As we continue to advance our knowledge in AAE and ASSAE, we need to clarify its definition and diagnostic criteria and promote recognition of relevant symptoms (detailed in Table 2) that would lead to early neurology referral and timely diagnosis. The recently developed Antibody Prevalence in Epilepsy and Encephalopathy (APE2) score and Antibodies Causing Epilepsy Syndromes (ACES) score have helped build a foundation for diagnosing ASSAE and AAE; however, there remains much ambiguity. Studies are needed to identify additional CSF and imaging biomarkers to help guide therapy and long-term monitoring.

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 Study Seeks Your Participation

Dr Mastura Monif-Victoria-Australia
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

 

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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