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theherd - THE HERD August 2021 1st edition

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

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

In this Issue~

 

  • *Announcements: #AETuesdayTries & Growing Your Resilience Organizer, AE Study in Australia, New Engagement Program for Patients and Caregivers
  • *Children’s Corner (for all ages): Create a Time Capsule, Gratitude is Good Medicine, Make a ‘Happy Jar’ 
  • *ABI Rehabilitation: Peak Brain Training app, Tune With Your Brain: Neuroscience and the power of music, Resilience word scramble
  • *Useful Tips for the AE Warrior: Ellie-Smart Pill Box
  • *Most Popular Visual Downloads: Pause, Stop. Someone in this house has a weak immune system sign
  • *COVID-19’s Impact on the AE Community: Effectiveness of Covid-19 Vaccines against the B.1.617.2 (Delta) Variant, Complex movement disorders in SARS-CoV-2 infection induced acute disseminated encephalomyelitis
  • *Featured Podcast: First Episode Psychosis
  • *Featured AE Article: Ketogenic Diet Therapy for the Treatment of Post-encephalitic and Autoimmune-Associated Epilepsies
  • *Clinician’s Corner: Anti-N-methyl-D-aspartate receptor encephalitis presenting as atypical psychosis in multiple sclerosis: a case report
  • *COVID-19 Clinician’s Corner: A case report of simultaneous autoimmune and COVID-19 encephalitis
  • *Open Access: Association between autoimmune encephalitis and epilepsy: Systematic review and meta-analysis
  • *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

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 August 31st 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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Create a Time Capsule

 

Take the time to fill in these pages for your future self to look back on. 

One day, your children may be telling their great-grandchildren about what it was like to live through the history-making challenges of 2020-2021. What better way to reflect on the past year — and remember where you were during historical events — than to make a family time capsule that you can open in five, ten or more years?

Gratitude is good medicine ~ Make a ‘Happy Jar’

 

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Gratitude is defined as the quality of being thankful; readiness to show appreciation for the good in your life and to return the kindnesses that you encounter daily.

A growing body of research is confirming that an ounce of gratitude is worth a pound of cure.

“The practice of gratitude can have dramatic and lasting effects in a person’s life,” said Robert A. Emmons, professor of psychology at UC Davis and a leading scientific expert on the science of gratitude.

“It can lower blood pressure, improve immune function and facilitate more efficient sleep. Gratitude reduces lifetime risk for depression, anxiety and substance abuse disorders.

Gratitude works

Emmons believes gratitude works because it allows individuals to celebrate the present and be an active participant in their own lives. By valuing and appreciating friends, oneself, situations and circumstances, it focuses the mind on what an individual already has rather than something that’s absent and is needed, he said.

Support your AE Warrior and Your Entire Family with your version of a ‘Happy Jar’.
Battling autoimmune encephalitis is such a huge challenge. It is difficult for us to remember the positive things we experience when each day is filled with coping with the symptoms of our disease and adjusting to ‘the new me’.
So, we wanted to share this idea as we feel it can be a helpful tool to aid you through those difficult times. You can model this example of a ‘Happy jar’ and create your own jar with a different focus that meets your needs. You can make a jar filled with what you are grateful for. Parents can fill a jar with notes of encouragement, praise, comment on accomplishments. Maybe you decide to make a ‘happy memories’ jar or jot down something you did that represents improvement in your AE journey. Since our memories are affected by AE, reminding ourselves of any progress reinforces encouragement that we are making progress. 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.
Of course, you can dip into the jar and randomly read notes throughout the week when the need arises. Start off with a positive note – literally – and deposit it in your jar.

 

ABI Rehabilitation From AE

 

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Peak – Brain Training

 

Are you working on your cognitive rehabilitation from AE?

Peak is the fun, free brain training workout designed around you. Peak uses brain games and puzzles to challenge memory, language, and critical thinking to keep your mind active. 

Free brain games to challenge your Memory, Attention, Math, Problem Solving, Mental Agility, Language, Coordination, Creativity, and Emotion Control.

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In Tune With Your Brain: Neuroscience and the power of music

 

What happens in your brain when you listen to music?  In neuroscience terms, it might be because music is an auditory channel towards areas of the brain that are important for emotion and for social processing.

The potential for music as a therapy for dementia was also explored in this easy read article. Dementia-related illnesses are complex disorders characterized by abnormal changes that range from the molecular and neural systems level to behavior marked by memory and learning deficits.

Using an electroencephalogram (EEG), researchers can probe the integrity of our neural systems, by detecting wave patterns emitted from our brains. In older adults, brain rhythms that have fallen out of sync (or lost their “coupling”) have been observed to correlate with cognitive impairment and worsened working memory — the kind of memory used to organize information by temporarily holding it in your brain while planning out subsequent goal-directed behavior.

Resilience Word Scramble Puzzle

 

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Word scramble games are a wonderful exercise to do for brain injury rehabilitation from AE.  They are a great activity to help your AE warrior develop their problem-solving and analytical skills.

IAES has created this word scramble that feature hidden keywords that will encourage and aid you in focusing on your resilience and recovery.  We hope you feel the love, encouragement and support as you solve this puzzle and realize you are not alone on your journey and that you are resilient. 

Challenge yourself with this puzzle and others that you will find as free downloads on our website. Then look through the puzzles in the AE Warrior Store that have been created with art by fellow AE patients. You are sure to become inspired and challenged in your recovery efforts. 

Useful Tips for Patients & Families

 

The Ellie Smart Pill Box & APP

 

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  • Organize In Seconds. Ellie organizes pills by type, not by time. Refill in seconds by simply pouring your pills straight in from the bottle.
  • Program Alarms/tunes. Connect to your pill box via Bluetooth and program alarms with our easy to use mobile app.
  • Receive Reminders: When it is time to take your pills, the pill box will ring and you will receive a notification that comes with a fun trivia question!
  • Follow The Lights: Whenever it is time to take your pills, open the pill box and lights will tell you which pills to take and how many.
  • Tracks your compliance and allows you to send reports to people. 
  • Now covered by insurance.

Most Popular Download

 

Stop. Someone in this House Hs a Weak Immune System

 

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Some of you live in “hot spot” areas for COVID-19 and the Delta variant and are being very mindful we are sure. This sign may come in handy. Tape it in a front window or on your front door as an added layer of protection. 

Pause

 

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Covid-19

COVID-19’s Impact on the AE Community

 

Effectiveness of Covid-19 Vaccines against the B.1.617.2 (Delta) Variant

 

RESULTS

Effectiveness after one dose of vaccine (BNT162b2 or ChAdOx1 nCoV-19) was notably lower among persons with the delta variant (30.7%; 95% confidence interval [CI], 25.2 to 35.7) than among those with the alpha variant (48.7%; 95% CI, 45.5 to 51.7); the results were similar for both vaccines. With the BNT162b2 vaccine, the effectiveness of two doses was 93.7% (95% CI, 91.6 to 95.3) among persons with the alpha variant and 88.0% (95% CI, 85.3 to 90.1) among those with the delta variant. With the ChAdOx1 nCoV-19 vaccine, the effectiveness of two doses was 74.5% (95% CI, 68.4 to 79.4) among persons with the alpha variant and 67.0% (95% CI, 61.3 to 71.8) among those with the delta variant.

CONCLUSIONS

Only modest differences in vaccine effectiveness were noted with the delta variant as compared with the alpha variant after the receipt of two vaccine doses. Absolute differences in vaccine effectiveness were more marked after the receipt of the first dose. This finding would support efforts to maximize vaccine uptake with two doses among vulnerable populations. (Funded by Public Health England.)

 

Complex movement disorders in SARS-CoV-2 infection induced acute disseminated encephalomyelitis

 

ADEM is an autoimmune monophasic multifocal demyelinating disorder of the central nervous system, which is frequently associated with preceding viral infections. In recent times, though rarely, SARS-CoV-2 infection has been linked to development of ADEM both in adult and pediatric patients. Pathogenetic mechanisms for the development of ADEM following SARS-CoV-2 infection may be either mediated by direct neurotropism or by aberrant immune mediated injury, the latter being the most likely.

Movement disorders, as a presenting manifestation of ADEM, are extremely rare and more so in adults. Whether a case of ADEM will develop movement disorders or not, will certainly depend upon involvement of areas of brain that control movements (basal ganglia and its connections). Specifically, ataxia, myoclonus, dystonia, chorea and tremor have been reported in ADEM. On the other hand, movement disorders are sparsely reported in SARS-CoV-2 infection. The most commonly movement disorders reported in COVID-19 have been different types of myoclonus, followed by opsoclonus, ataxia, hypokinetic-rigid syndrome and tremor. However, some of the previously reported cases, primarily those with myoclonus, could be ascribed to medication exposures, metabolic disturbances or severe hypoxia, meanwhile others to a post-or para-infectious immune-mediated mechanism.;

Neurological manifestations of COVID-19 have attracted attention among neurologists across the world. Our case adds to the tally of novel cases of post-SARS-CoV-2 infection related neurological manifestations as well as to the exceedingly rare list of cases in whom a cocktail of complex movement disorders preceded ADEM.

Featured AE Podcast~

 

Pathologic tearfulness after limbic encephalitis: A novel disorder and its neural basis

 

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In the second part of the podcast, which begins 12 minutes in, Dr. Stacey Clardy speaks with Dr. Chris Butler about his paper on pathologic tearfulness after limbic encephalitis. 

Featured AE Article~

 

Ketogenic Diet Therapy for the Treatment of Post-encephalitic and Autoimmune-Associated Epilepsies

 

In addition to its potential role in the treatment of acute refractory status epilepticus in patients with PE and AE, ketogenic diet therapies may be feasible and safe in the management of chronic post-encephalitic and autoimmune-associated epilepsy. Patients with prior history of SE might respond better to KDT. Further studies are needed to explore the efficacy of KDT in managing seizures in patients with PE and AE. Moreover, whether the early use of KDT can alter the pathophysiology, prognosis, and outcome of patients with encephalitis warrants further exploration. 

Clinician’s Corner

 

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Anti-N-methyl-D-aspartate receptor encephalitis presenting as atypical psychosis in multiple sclerosis: a case report

 

Conclusions

There is literature to demonstrate a possible connection between anti-NMDAR encephalitis and demyelinating syndromes. As such, autoimmune encephalitis should be considered in patients with multiple sclerosis presenting with atypical symptoms. Determining the correct diagnosis is crucial to inform the appropriate treatment protocol, and to improve prognosis.

woman in pain wearing mask covid

COVID-19 Clinician’s Corner

 

A case report of simultaneous autoimmune and COVID-19 encephalitis

 

COVID-19 encephalitis is a rare condition usually presenting with altered mental status. Simultaneous presence of anti-NMDAR antibody and SARS-CoV-2 virus in CSF is a very rare condition described in a few case reports so far. On the other hand, brain edema is an unusual presentation of anti-NMDAR encephalitis. Herein, we reported a case with simultaneous detection of anti-NMDAR antibody and SARS-CoV-2 virus in her cerebrospinal fluid (CSF) presenting with brain edema, altered mental status, seizures, and respiratory symptoms.

In this case, we had simultaneous presence of SARS-CoV-2 RNA and NMDAR antibody in CSF accompanied by generalized brain edema which is rare, and to our knowledge, it has never been addressed so far. Although many new insights have been provided in regard to the pathogenesis of COVID-19, precise interactions between virus-host cells remain unclear.

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Association between Autoimmune Encephalitis and Epilepsy: Systematic review and meta-analysis

 

Highlights: 

  • Diverse neuronal antibodies, such as anti-NMDAR, anti-AMPAR, anti-GABA-AR, anti-GABA-BR, anti-LGI1, and etc., were found to be associated with autoimmune encephalitis (AE) and AE-related epilepsy.

  • Epidemiologically, there are still gaps in demonstrating the combination of AE with seizures, the development of AE to epilepsy, and the positive rate of antibodies in patients with epilepsy.

  • Understanding the epidemiology of AE and AE-related epilepsy is crucial and beneficial for early health care management, therapeutic strategies and decision, as well as prognosis prediction.

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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