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theherd - THE HERD December 2021 1st edition

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

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

In this Issue~

 

  • *Announcements:  AE Awareness Month Merchandise, The Well-Being Gratitude Journal#AETuesdayTries
  • *Children’s Corner (for all ages): Electroencephalography characteristics to predict one-year outcomes in pediatric anti-NMDAr encephalitis, Jigsaw Puzzles
  • *ABI Rehabilitation: Qcard-Outsmart Forgetfulness 
  • *Helpful Tips for the AE Warrior:  HealthWell’s Pediatric Assistance Fund, AmazonSmiles 
  • *Most Popular Visuals: Life with AE, Bad Days
  •  COVID-19’s Impact on the AE Community:  The Hidden Long-term effects of COVID-19 
  • *Letter to my “Before AE Self”: Learn how to participate. Certificate of Recognition given for every Submission
  • *Clinician’s Corner: Antibody-mediated Autoimmune Encephalitis: A practical approach
  • *COVID-19 Clinician’s Corner: Impact of COVID-19 in Immunosuppressed Children With Neuroimmunologic Disorders
  • *Open Access: Rituximab Treatment and Long-term Outcome of Patients With Autoimmune 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

 

AE Awareness Month Merchandise

#BelieveYouCan is the 2022 theme for Autoimmune Encephalitis Awareness Month, February 2022. Feel empowered in believing you can recover from AE, and create change in the world that raises awareness leading to a cure. 

T-shirts have a 2-sided design and may be ordered in a variety of styles (see right side for options). The design on the back of the Tee has the IAES zebra logo and the wording  ‘Autoimmune Encephalitis Awareness Month 02-2022’.

These products may begin a conversation that could lead to saving a life.  

The proceeds of your purchase support AE research and will have an immediate positive impact on patients, caregivers, and families who are fighting this rare brain disease. 

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.

Children’s Corner

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Electroencephalography characteristics to predict one-year outcomes in pediatric anti-NMDAreceptor encephalitis

Results: Nine patients (6 females) (range 1.9-16.7 years) were included. Five of nine patients had loss of posterior dominant rhythm (PDR) and three of nine patients had absent sleep architecture. Loss of PDR correlated with a worse mRS score at one year (2.8 versus 0.5, p = 0.038). Loss of PDR and loss of sleep architecture was associated with increased inpatient rehabilitation stay and in higher number of immunotherapy treatments administered. In multivariate analysis, absence of sleep architecture (p = 0.028), absence of PDR (p = 0.041), and epileptiform discharges (p = 0.041) were predictors of mRS at one year.

Conclusions: Loss of normal PDR, absence of sleep architecture, and epileptiform discharges are associated with worse outcomes at one year which has not been reported before. EEG characteristics may help prognosticate in NMDARE. Larger studies are needed to confirm these findings.

Jigsaw Puzzles Original Art by AE Warriors

 

 

Original art by autoimmune encephalitis patients makes these puzzles a unique gift, challenge & collectors item. Puzzles are a long-time group or individual past time. They are a highly recommended cognitive exercise for anyone with a brain injury or in recovery from illness. Puzzles assist with comprehension, organization, memory, hand-eye coordination, fine motor skills and provide goal setting, patience, and a sense of achievement.

ABI Rehabilitation From AE

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Qcard- Outsmart Forgetfulness

Qcard is a life management app to help people who need a better way to remember, manage and get things done. It was created by a man who was involved in a serious motor vehicle accident, which resulted in a brain injury that changed his life. His struggles and frustrations led him to develop Qcard as a tool for himself and it helps people living with brain injuries or anyone with memory impairments.

Helpful Tips for Patients & Families

 

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HealthWell’s Pediatric Assistance Fund

 

 

If you live in the USA, HealthWell assists individuals with incomes up to 400-500% of the Federal Poverty Level. The Foundation also considers the number in a household and cost of living in a particular city or state.

To qualify for assistance from HealthWell, you must have some form of health insurance (private insurance, Medicare, Medicaid, TriCare, etc.) that covers part of the cost of your treatment. The Foundation will refer patients without prescription insurance to other programs, such as manufacturer patient assistance programs.

They can only assist with medications that have been prescribed to treat the disease/covered diagnosis. 

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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.

Most Popular Visuals

Life With AE

Life with AE

Bad Days

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Covid-19

COVID-19’s Impact on the AE Community

The Hidden Long-term Effects of COVID-19

COVID can cause damage to the brain directly by encephalitis, which may have devastating or subtle consequences. In one British study of 12 patients with encephalitis, one made a full recovery, 10 made a partial recovery, and one died. This study also found that a number of patients with COVID suffered strokes. In fact, COVID infection is a risk factor for strokes. A group of Canadian doctors found that individuals over 70 years of age were at particularly high risk for stroke related to COVID infection, but even young individuals are seven times more likely to have a stroke from this coronavirus versus a typical flu. 

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Letter to My “Before AE Self”~

Each Participant will Receive a

Certificate of Recognition

Hello AE Family,

February, AE awareness month, will be here before you know it. Excitement is brewing as plans are being made. This year IAES has adopted the theme #BelieveYouCan. In that spirit, we are inviting all of you to participate in raising awareness by writing a letter to your ‘before AE self’.

Your letters will be published in the IAES blog during AE awareness month. Everyone who participates will receive a beautiful certificate of recognition. The IAES Blog team will assist with editing your work if you require support and will give you final approval of your submission prior to publication. 

If you were to write a letter to the ‘you’ before you got AE, what would you want that ‘you’ to know?

My letter to myself changes daily and monthly but the main thoughts usually remain the same. 

Mostly, I would say: “Dear Jeri, you don’t know this yet, but you really do not need to sweat the small stuff, love unconditionally, there may be a rough road ahead but, you, Jeri, are going to make it and be grateful for it.”

To be honest there have been times when this letter to myself may be more of a rant against AE. Like I said, it varies as does all our individual AE paths and stories.

Help open the eyes, hearts and minds of the public and medical community via your powerful letter to your ‘before AE self’. All letters must be received by January 7th.  Send your letters to me, Jeri Gore, Editor-in-Chief, IAES Blog Division e-mail: jeri.gore@autoimmune-encephalitis.org

Clinician’s Corner

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Antibody-mediated autoimmune encephalitis: A practical approach

KEY POINTS

  • AE is an umbrella term for a group of inflammatory central nervous system disorders associated with neuronal autoantibodies or other biomarkers of central nervous system autoimmunity.

  • Common clinical presentations include progressive neurocognitive symptoms with concomitant movement disorders, seizures, and autonomic dysfunction that worsens over weeks to months.

  • Objective clinical findings are needed to make the diagnosis of AE, including changes on magnetic resonance imaging, electroencephalography, and cerebrospinal fluid analysis.

TAKE-HOME MESSAGE

Our understanding of AE has expanded dramatically over the past few years. Familiarity with different AE syndromes will ensure prompt diagnosis and treatment. In cases that are less clear, a sound diagnostic approach anchored on objective clinical or radiographic findings is important for optimizing outcomes. Clinicians need to stay abreast of developments in this field as the breadth of immune-mediated disorders of the nervous system continues to evolve.

woman in pain wearing mask covid

COVID-19 Clinician’s Corner

Impact of COVID-19 in Immunosuppressed Children With Neuroimmunologic Disorders 

In this cohort of children with neuroimmunologic disorders, the frequency of COVID-19 was low and not affected by immunosuppressive therapies. The main risk factors for developing COVID-19 were having cohabitants with COVID-19 and low vitamin D levels.

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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.

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.

shop with Paypal-Facebook Post
Amazon-Smiles-IAES-FB

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.

baC - THE HERD December 2021 1st edition

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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