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theherd - THE HERD November 2021 1st edition

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

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

In this Issue~

 

  • *Announcements: National Family Caregiver Month,
    The Well-Being Gratitude Journal#AETuesdayTries, Health at a Glance Form for AE Warriors 
  • *Children’s Corner (for all ages): Autoimmune Encephalitis in Children: An Update, Thanksgiving Word Scramble Puzzle
  • *ABI Rehabilitation: Brain Maps Look Alike for Podcasts and Reading 
  • *Helpful Tips for the AE Warrior: Persons with Disabilities Discount Guide: The Ultimate List of Stores & Services 
  • *Most Popular Visual Downloads: Things I am Still Learning as an AE Warrior, The Damaged Brain
  • *COVID-19’s Impact on the AE Community: Physical, cognitive, and mental health impacts of COVID-19 after hospitalization (PHOSP-COVID): a UK multicenter, prospective cohort study
  • *Featured AE Article: Rituximab Treatment and Long-term Outcome of Patients with Autoimmune Encephalitis 
  •  *Clinician’s Corner: Understanding Seizures and Prognosis  of the Extreme Delta Brush Pattern in Anti-N-Methyl-D-Aspartate (NMDA) Receptor Encephalitis: A Systematic Review
  • *COVID-19 Clinician’s Corner: Acute Hemorrhagic Encephalitis Related to COVID-19
  • *Open Access: Autoimmune Limbic Encephalitis: A Review of Clinicoradiological Features and the Challenges of Diagnosis
  • *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

 

National Family Caregiver Month  

Royal IAES Registry Certificate for Caregivers

AE Sentinel_2021-Certificate

Do you have a caregiver in your life who has devoted themselves to seeing that your best interests are their top priority? Many of us are only alive today because of that special person who loves us so much, they were there when we could not take care of ourselves.

If you have someone in your life, I hope you honor them with this certificate. The Royal IAES Registry designates the AE Sentinel (Caregiver) with a Royal Title.  In recognition of their heroism under fire. The Royal IAES Registry is the highest honor that can be bestowed upon caregivers engaged in the mighty battle of autoimmune encephalitis.

Certificates are normally five dollars but are free via The Herd throughout the month of November.  We recommend you download your certificate on a high quality paper of your choosing to bring it more visual appeal. 

Check out the ‘AE Warrior Gifts’ page on the IAES website for other inspiring ideas for your caregiver this month. Download a free candy bar wrapper with a caregiver design or create a Caregiver Survival kit. You will find other caregiver gift options at the AE warrior Store. 

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 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 November 30th 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.

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.

Children’s Corner

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Autoimmune Encephalitis in Children: An Update

KEY MESSAGES

• Pediatric autoimmune encephalitis forms a group of acquired disorders with antibodies targeting cell-surface antigens or intracellular antigens that are treatable.

• Pediatric disease manifests differently from adults, with less frequent association with neoplasms and predominance of movement disorders, behavioral abnormalities and seizures.

• Anti-NMDAR encephalitis is the most common pediatric autoimmune encephalitis. It exhibits typical clinical features (limbic encephalitis) as well as imaging abnormalities (mesial temporal signal change) although these may be seen in only 30-40% of patients. Hence, clinical recognition is the key. It responds well to early therapy.

• Treatment involves immunomodulation which should be initiated empirically as soon as the diagnosis of autoimmune encephalitis is suspected, even prior to the availability of antibody test results.

Thanksgiving Word Scramble puzzle

 

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Word Scramble puzzles are a wonderful exercise to do for brain injury rehabilitation from AE. These word scramble worksheets are a great activity to help your kids develop their problem solving and analytical skills. These printable worksheets features Thanksgiving words to unscramble and a picture to color.  The word list is also provided at the bottom of each worksheet so that you can check your answers.

Puzzles offered here range from easy>medium level of difficulty>hard>super hard.

Choose other fun and educational activities to keep your kids busy.  Coloring pages connect the dots, crafts, crossword puzzles, maze worksheets, pattern worksheets, story starters, sudoku puzzles, word decoders, and word scrambles are all here for your children to try while working on rehabilitation from a brain injury caused by their AE.

ABI Rehabilitation From AE

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Brain Maps Look Alike for

Podcasts and Reading

Many of us may have a hard time reading after our brain injury from AE. Research has shown that reading and audible books use the same parts of the brain.

 So, listening to books on tape is not a cheat, it equally uses the same parts of the brain and can be a helpful tool in rehab as well as enjoyable for those who were avid readers.

Helpful Tips for Patients & Families

 

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Persons with Disabilities Discounts Guide: The Ultimate List of Stores & Services 

 

The Dealhack PWD Discounts Guide is the ultimate savings guide for persons with physical, intellectual, and sensory disabilities. Every three months, we update the lists to include the newest offers to help you save on your purchases. The list currently consists of more than 80 stores and services divided into 19 categories. 

This comprehensive PWD discount guide can be saved in PDF format so it can be accessed from any device.

Most Popular Download

Things I am Still Learning as an AE Warrior

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The Damaged Brain 

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Covid-19

COVID-19’s Impact on the AE Community

Physical, cognitive, and mental health impacts of COVID-19 after hospitalization (PHOSP-COVID):

a UK multicentre, prospective cohort study

The post-hospitalization COVID-19 study (PHOSP-COVID) is a long-term multicentre study of adults discharged from hospital in the UK with a diagnosis of COVID-19. In this publication from the PHOSP-COVID group, report on 1,077 patients a median of six months post-discharge. In total, only 29% of participants reported full recovery at this point. The ten most commonly reported persistent symptoms recorded at follow-up were almost exclusively neuropsychiatric and  included: myalgia, fatigue, physical ‘slowing down’, impaired sleep quality, joint pain or swelling, limb weakness, breathlessness, pain, short-term memory loss, and slowing down in thinking. Furthermore, over 25% of the cohort had clinically significant symptoms of anxiety and depression, and 12% had post-traumatic stress symptoms. As with physical symptoms, the severity of acute covid-19 illness and patient-reported outcomes of mental health, fatigue, and cognitive impairment were mostly unrelated; measures of lung function, walking performance, and changes in health-related quality of life appeared worse in those who had received mechanical ventilation, but the impact on health status by symptoms (breathlessness, fatigue, pain, anxiety, and depression) and other measures of organ function were unrelated to acute illness severity. This data further supports the notion that severity of persistent physical and mental ill health and cognitive impairment are due to mechanisms other than those directly related to severity of the acute lung injury in COVID-19.

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Featured AE Article~

Rituximab Treatment and Long-term Outcome of Patients with Autoimmune Encephalitis

Results support the efficacy of early rituximab treatment in NMDAR-, LGI1-, and CASPR2-AE and suggest that short-term therapy could be a treatment option. They also suggest that patients with long-standing GAD65 disease are less likely to benefit from B-cell depletion than the other AE subgroups.

Clinician’s Corner

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Understanding Seizures and Prognosis of the Extreme Delta Brush Pattern in Anti-N-Methyl-D-Aspartate (NMDA) Receptor Encephalitis: A Systematic Review

The etiology of the EDB remains essentially unknown. However, it has been postulated that in ANMDAR encephalitis, there is a disruption of the rhythmic neuronal activity. When antibodies block/target NMDAR, the rhythmic neuronal activity is disrupted, leading to the unique EDB pattern. Another theory suggests that delta activity is caused because of focal abnormalities in the brain, and the superimposition of the beta waves is related to the alterations of the NMDA receptors.

There was wide variability in the prevalence of EDB (6%-58%) in our sample which could be related to the timing of the EEG recording. The pooled prevalence was 30.89% (55/178) in patients with seizures. Overall, two studies concluded worse short-term outcomes in patients with EDB but the other two studies displayed a lack of such evidence. Some patients with EDB had prolonged hospital stays, increased ICU admission, and a higher frequency of status epilepticus. These findings suggest that the EDB pattern may be a marker of more severe disease and worse short-term outcomes, while long-term outcomes are not affected. Since treatment with Therapeutic Plasma Exchange (TPE) in severe anti-NMDAR encephalitis can improve short-term clinical outcomes including epilepsy, we suggest that every patient with EDB pattern may benefit from this treatment.

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COVID-19 Clinician’s Corner

Acute Hemorrhagic Encephalitis Related to COVID-19

SummaryThe underlying mechanism for developing acute hemorrhagic encephalitis in viral illnesses may be autoimmune in nature and warrants further investigation. The initial neurologic presentation of COVID-19-related hemorrhagic encephalitis is altered level of consciousness, which may prompt further neurologic examination and imaging to exclude this feature.

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Autoimmune Limbic Encephalitis: A Review of Clinicoradiological Features

and the Challenges of Diagnosis

Autoimmune Limbic Encephalitis: A Review of Clinicoradiological Features and the Challenges of Diagnosis — Autoimmune limbic encephalitis is a challenging diagnosis for several reasons. The clinical presentation can mimic various other diseases and, therefore, the differential diagnosis is large. Additionally, radiological features are frequently absent or non-specific in the more common subtypes. Being aware of the ways in which LE can present allows it to be considered as a diagnostic possibility in undifferentiated neuro-psychiatric presentations, which in turn improves treatment outcomes. Ongoing research into the pathogenesis and application of novel radiological techniques will assist in further characterizing these conditions in the future.

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 #BelieveYouCan AE Awareness Month 2022 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. MakeMeSmile is an extension for Chrome that makes sure you select International Autoimmune Encephalitis Society when you shop online. It’s free to download. And you  don’t even need to sign up.

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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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