Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
March 2023 1st Edition
In this Issue~
- *Children’s Corner (for all ages): Finding Nemo Dot-to-Dot, Life-altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions
- *ABI Rehabilitation: Brain Maze Puzzle – In Recognition of Brain Injury Awareness Month
- *Helpful Tips for the AE Warrior: Autoimmune Encephalitis and Related Disorders of the Nervous System, HealthWell’s Pediatric Assistance Fund
- *Most Popular Visuals: 4 Autoimmune Encephalitis Facts, AE Warrior Poster
- *Featured AE Article: Why Are Brain Injuries So Misunderstood?
- *Video: “See Me” Brain Injury Awareness Month
- *Clinician’s Corner: A Sharp Rise in Autoimmune Encephalitis in the COVID-19 Era: A Case Series
- *Open Access: Autoimmune Encephalitis Misdiagnosis in Adults with Video Presentation
- *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers
- *AE Studies & Clinical Trial: The IGNITE Study, The ExTINGUISH Trial
- *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
Finding Nemo Dot-to-Dot
Life-altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions
The effects of acquired brain injury can be unpredictable and alter the lives of the affected individual and their families. The goal of this study was to evaluate how children and other family members are affected and to understand the best approach to providing support.
ABI Rehabilitation From AE
Brain Maze Puzzle – In Recognition of Brain Injury Awareness Month
In recognition of Brain Injury Awareness Month, IAES has this brain maze puzzle challenge for you.
Maze puzzles improve cognitive skills. They work like a brain-boosting exercise. Solving a maze makes you think, reason, and remember. Simultaneously achieving all of these, sharpens the individual’s memory, builds their focus, and increases the concentration level of their minds to a great extent. Autoimmune Encephalitis leaves the patient with brain injury. Re-learning and re-training your brain is the focus of rehabilitation.
Helpful Tips for Patients & Families
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.
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 the 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.
Most Popular Visuals
4 Autoimmune Encephalitis Facts
AE Warrior Poster
Featured AE Article
Why Are Brain Injuries So Misunderstood?
Many of us struggle with family or loved ones understanding how AE effects us long term, they look at us and we may look the same, but we are not. Trying to get them to understand how we are different and the help we need or do not need is often difficult. This article may be helpful in identifying how others may see us and how to address it.
“See Me” Brain Injury Awareness Month
March is Brain Injury Awareness Month. Brain injury is largely an invisible disability. The person may look untouched by challenges and disability when in actual fact, all areas of their lives have been negatively impacted. The #SeeMe campaign brings attention to the challenges of living with brain injury. Each year about 2.5 million individuals worldwide sustain a brain injury of which approximately 50,000 results in death, and over 80,000 suffer permanent disability.
A Sharp Rise in Autoimmune Encephalitis in the COVID-19 Era: A Case Series
Autoimmune encephalitis is a serious but treatable condition with recovery potential; thus, the current observation of an alarming surge in autoimmune encephalitis with mostly GAD and/or VGKC antibodies detected during the current COVID-19 pandemic has important implications. Clinicians should have increased suspicion of autoimmune-related neurological pathologies in the COVID era. As such, we should order autoimmune encephalitis antibodies when deemed appropriate and initiate treatment without waiting for the titer results. More specifically, clinicians should increase their surveillance of GAD or VKGC markers and other autoimmune diseases, as this may be a significant sequela of this pandemic. Laboratories should make these tests more readily available, and the turnaround time should be shorter. Practitioners and hospitals should anticipate an increase in the use of immune modulation therapies. More studies are needed to work out the pathophysiology and molecular aspects of our current observation, as well as to study the efficacies of various immune modulations.
Autoimmune Encephalitis Misdiagnosis in Adults
Whether you are a clinician treating this group of diseases or a patient/family member, you will have a greater understanding of how an AE diagnosis is arrived at. Patients must meet the criteria of ‘Possible Autoimmune Encephalitis’ as outlined in the gold standard paper, A Clinical Approach to Diagnosis of Autoimmune Encephalitis, as a starting point for further investigation. The focus is always to reach an accurate diagnosis, so the patient can be accurately treated and receive the best long-term outcome.
When evaluating for Autoimmune Encephalitis, a broad differential diagnosis should be considered and misdiagnosis occurs in many settings including at specialized centers. In this study, red flags suggesting alternative diagnoses included an insidious onset, positive nonspecific serum antibody, and failure to fulfill Autoimmune Encephalitis diagnostic criteria. Autoimmune Encephalitis misdiagnosis leads to morbidity from unnecessary immunotherapies and delayed treatment of the correct diagnosis.
Dr. Flanagan gave an outstanding webinar for IAES members on this paper last month. It can be viewed below.
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on March 9th 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.
The next monthly #AETuesdayTries zoom meet-up will take place on March 28th, 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
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
|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.
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.