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

Supportive assistance guide for your AE Journey~

October 2022 2nd Edition

•  *Children’s Corner (for all ages): Halloween Word Search Puzzles, Long-term Outcome of Pediatric anti-NMDAR Encephalitis
• *ABI Rehabilitation: Gulf Stream, Find Your Way Game
• *Helpful Tips for the AE Warrior:  Autoimmune Encephalitis and Related Disorders of the Nervous System
• *Most Popular Visuals: Recovery, Seizure Triggers 
• *Featured AE Article: Families’ Experiences Living with Acquired Brain Injury: “Thinking Family” -A Nursing Pathway for Family-Centered Care
• *Podcast: Autoimmune-associated Epilepsy
• *Clinician’s Corner: Editorial: Antibody-Mediated Autoimmune Diseases of the CNS: Challenges and Approaches to Diagnosis and Management
• *Open Access: Anti-NMDAr encephalitis and vaccination: A disproportionality analysis
• *AE Studies & Clinical Trial: The IGNITE Study, The ExTINGUISH Trial
• *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers   
• *AE Trivia Cards:  The Single Most Important Educational/Rehabilitation Tool for AE 
• *AE Warrior Store:  Shop for Your AE Bling and Raise Awareness 
• *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Children’s Corner

Halloween Word Search Puzzles

Enjoy this fun-filled collection of 37 Halloween-themed word search puzzles. Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from Autoimmune Encephalitis. Re-learn and re-train your brain by developing problem-solving, attention span, organizational and analytical skills.

Long-term Outcome of Pediatric anti-NMDAR Encephalitis

81 patients under 18 participated in the study. At the last follow-up, 35 patients (45%) had cognitive impairment, 48 (70%) had academic difficulties, and 65 (92%) needed rehabilitation. Seventy-one patients (88%) had a modified Rankin Scale score of no more than 2. A higher number of symptoms at diagnosis was associated with cognitive impairment (p = 0.01), while an abnormal electroencephalogram at diagnosis increased the risk of academic difficulties (p = 0.03).

Interpretation: Although most children with NMDAR-E seemed to recover from motor disabilities, more than 45% had cognitive and academic difficulties. The initial severity of symptoms seems to have an impact on cognition and academic performance.

ABI Rehabilitation From AE

Gulf Stream

This packet is great for all ages! Senior patients will love the challenge, and pediatric patients will love the fish. It’s a great packet to help re-learn and re-train your brain after brain injury from Autoimmune Encephalitis. Work on your short-term memory, attention, and recall skills with this fun, free mini packet! 

Find Your Way

Helpful Tips for Patients & Families

Book Recommendation: 

Autoimmune Encephalitis and Related Disorders of the Nervous System

Autoimmune encephalitis, diseases where the immune system attacks the brain, have become a fast-moving field of study in recent years. The authors, Drs Josep Dalmau (who collaborated with IAES on AE Trivia Playing Cards), and Francesc Graus, have played pivotal roles in the discovery of these diseases. Here, they provide a comprehensive clinical guide to the differential diagnosis of these disorders, illustrated with over 200 figures, 30 videos and numerous clinical vignettes, many from their own practice. Clinical descriptions are straightforward, emphasizing distinctive diagnostic clues for each disease. The strengths and weaknesses of diagnostic tests and clinical criteria are discussed extensively, as well as the best evidence supporting the use of available treatments. There is an up-to-date description of immunological triggers and comorbidities, and well-illustrated and clearly summarized pathogenic mechanisms and disease models.

Most Popular Visuals

Recovery

Seizure Triggers

Featured AE Article

Families’ Experiences Living with Acquired Brain Injury: “Thinking Family” -A Nursing Pathway for Family-Centered Care

This article reviews the three life-stage chapters of dealing with brain injury: (1) Before the Acquired brain injury (ABI) Event—Families: a grounding force, (2) Now Living with the ABI Event—a. losses individual and family, b. family adaptive capacities and, c. experiences with the healthcare system: hospital and home, and, (3) The Future—A patchwork future, entering the unknown.

This study illuminated families’ strengths and resiliency by demonstrating families have inherent competencies and adaptive capacities that help them to establish effective psychosocial coping and functioning while living with ABI. Instead of families experiencing increasing loss of identity issues, in this study, families’ beliefs about their identity as a family unit were maintained and became more solidified while living with the ABI. These families described an increased sense of belonging and used their relationships as resources for each other, thereby having less functional difficulties. While families in this study described stressful and challenging experiences, the role changes they recounted were not viewed as a loss that was negative and burdensome; rather families demonstrated flexibility as they accepted the forced role changes and adapted. Establishing collective beliefs and meanings of the ABI situation helped these families tolerate the losses and adjust to the different circumstances. Participant families’ demonstrations of strength and resiliency attest to their capabilities as carers and supporters of their loved ones with ABI.

Podcast

Autoimmune-associated Epilepsy

Dr. Claude Steriade talks with Dr. Maryam Nabavi-Nouri about distinguishing acute seizures with autoimmune causes from autoimmune-associated epilepsy—and why it can be difficult to tell the difference. She discusses the biological, clinical, and therapeutic differences between these two disease states, and what is known about effective diagnosis and treatment.

Clinician’s Corner

Editorial: Antibody-Mediated Autoimmune Diseases of the CNS: Challenges and Approaches to Diagnosis and Management

Open Access

Anti-NMDA receptor encephalitis and vaccination: A disproportionality analysis

In this study, we sought to determine whether the administration of certain vaccines may be associated with an increased risk of the occurrence of anti-NMDAR encephalitis. We identified a pharmacovigilance signal for seven of the vaccine types investigated. According to our findings, a pharmacovigilance signal exists for the following vaccines: HPV, DTP-polio, influenza, varicella zoster, pneumococcal disease, HIB, and yellow fever.

Since the vaccines against COVID-19 are new, especially those using messenger RNA (mRNA) technology, there is currently no firm data available about their possible implication in the onset of auto-immune encephalitis. However, several publications have described cases of auto-immune encephalitis occurring after COVID-19 vaccination, regardless of the type of vaccine used. 

Despite the existence of a pharmacovigilance signal for certain vaccines, the benefits of vaccination should not be called into question and remain largely superior to the risks.

Monthly Zoom Support Groups For Patients and Caregivers

Caregiver Monthly Zoom Support Group

The next monthly meeting will take place on November 10th at 6 pm PST/9 pm EST. The IAES Caregiver Support Group takes place on the 2nd Thursday of each month. This is a ‘safe space’ where caregivers can build relationships/friendships with others who are “walking that walk”, share/vent, and receive the support and direction they so richly deserve.

AE Caregivers have a variety of unique challenges that are different from the AE Warrior’s. Often they feel alone and need to be able to share their concerns with others who are on that same journey. Sometimes hearing a chorus of ‘Me Too!’ can have great healing power of its own. Additionally, some of you may qualify for services you are unaware of that could assist or solve a challenge you (or your loved one) are having. As topics are discussed, your hostess, Mari Davis, will direct you to available solutions, services and supports.

Your Hostess, IAES Support Services Coordinator Mari Wagner Davis, has 30 years of experience as an accredited Nurse Case Manager. Mari’s professional career prior to becoming ill with Autoimmune Encephalitis was to locate and arrange for the support services needed for patients when released from the hospital to rehabilitation or home.

#AETuesdayTries

The next monthly #AETuesdayTries zoom meet-up will take place on October 25th, and will always be the last Tuesday of each month.

“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.

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 Studies and Clinical Trials 

The ExTINGUISH Trial

This is the first-ever Clinical Trial for a promising new drug, Inebilizumab, to treat anti-NMDA receptor encephalitis, and will be funded by the National Institutes of Health (NIH). 

This trial is actively recruiting. International Autoimmune Encephalitis Society is honored to be supporting the ExTINGUISH trial along with Autoimmune Encephalitis Alliance and The anti-NMDA Receptor Encephalitis Foundation. 

 Main Inclusion Criteria (in part)

Enrollment  is limited to 116 newly diagnosed patients with a confirmed diagnosis of anti-NMDAR Encephalitis who are 18 years or older. Patients must have received at least 3 days of methylprednisolone 1000 mg IV or equivalent corticosteroid within 30 days prior to randomization (Day 1). In addition, patients must have received EITHER of the following treatments within 30 days before randomization.

• IVIg, at a minimum dose of 2 g/kg
• Plasma exchange or plasmapheresis, with a minimum of 5 treatments. NOTE: These treatments may be provided during the screening period, but must be completed prior to randomization.

 mRS of ≥3 at the screening visit, indicating at least moderate disability.  Ability and willingness to attend study visits and complete the study.

The IGNITE Study

Drs. Emmanuel Mignot and Sergio Muñiz-Castrillo and their research group at Stanford University in California have requested IAES’s help in recruiting autoimmune encephalitis patients for The IGNITE study. This study aims to investigate the genetic predisposition to autoimmune encephalitis and related disorders.  Patients must have an identified antibody to participate. The patient may have an active case or be in remission. This exciting study includes patients of all ages and all antibodies. Patients outside of the United States will need the physician who diagnosed them, usually a neurologist,  to contact Dr. Muñiz-Castrillo directly. No travel is involved. Saliva and blood kits will be sent to you in the mail and can be returned by mail or dropped off at named participating pharmacies.

Your participation will help uncover that answer and your act of advocacy will eventually enhance lives! The first step to take is to fill out and submit the screening survey below.

Seronegative/antibody-negative patients can play an active advocacy role by distributing the IGNITE study flyer to their diagnosing doctor, and asking that it be posted at the infusion center you use, as well as hospitals and clinics you visit.

Sharing the flyer on your social media platforms will assist us in getting the highest level of participation possible. 

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

Doctor Recommended

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

AE Warrior Store

Shop for Your AE Bling and Raise Awareness

Susannah Cahalan, author of Brain on Fire: My Month of Madness, has graciously given IAES permission to use the phrase “Brain on Fire” as a theme for our 2023 AE awareness month t-shirt and products.  Keep your holiday gift-giving in mind as you view the collection. February’s AE Awareness month is always a special time to raise awareness.

AE Warrior Store products proclaim the bravery and fighting spirit it takes to fight AE and regain your health. Shirts, hoodies, hats, puzzles, mugs, and gift items make this your one-stop shop for patients, caregivers, and friends who have a vested interest in raising awareness for Autoimmune Encephalitis.  Designs can be transferred to any product you prefer. The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey.

IAES holds the trademark for #AEWarrior, AE Warrior and Autoimmune Encephalitis Warrior and is the creator of these phrases. Proceeds also go to support research that may one day lead to a cure.

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

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.

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.

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.