Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
May 2023 2nd Edition
In this Issue~
- *Children’s Corner (for all ages): “Brain on Fire”- Doctors Successfully Treat a Child Suffering From a Mysterious Disease, Animal Word Search
- *ABI Rehabilitation: Gratitude Journal for AE Patients and Caregivers
- *Helpful Tips for the AE Warrior: Book: To Add A Miracle: A Mother’s Journey (Fall) into the World of Autoimmune Encephalitis and Autism
- *Most Popular Visuals: Neurofatigue, 5 abilities that deteriorate after an acquired brain injury from Autoimmune Encephalitis
- *Featured AE Article: Use of anti-seizure medications in different types of autoimmune encephalitis: A narrative review
- *Video: If You Could Share 1 Thing with Your Neurologist, What Would It Be?
- *Clinician’s Corner: Anti-LGI1 encephalitis: A family affair
- *Open Access: The Importance of Cerebrospinal Fluid Investigation in First-episode Psychosis
- *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 AE Bling and Raise Awareness. Check out our new arrivals
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
“Brain on Fire” – Doctors Successfully Treat a Child Suffering From a Mysterious Disease
The sick child’s prognosis, who had not responded to conventional treatment, was bleak. Nevertheless, a group of doctors from Rutgers University thought there could be hope despite the conventional wisdom against pursuing any further treatment.
Animal Word Search
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.
IAES has a wonderful Rehabilitation cognitive exercise page that outlines exercises you can implement at home. Free cognitive functioning worksheets, word search puzzles, and adult coloring with an AE Warrior theme are all available to help with your rehabilitation. Younger patient projects are located on our Children’s Corner webpage.
ABI Rehabilitation From AE
Gratitude Journal for AE Patients and Caregivers
IAES has created this guided gratitude journal, a science-based practice for improving your health and happiness. The journal prompts you to reflect on what you are grateful for each day.
Rooted in positive psychology, this gratitude journal encourages science-backed practices for improving your health and happiness. Gratitude, defined as “being thankful and a readiness to show appreciation for and to return kindness,” is more than an emotion. It is a quality that can be learned, exercised, and adopted to cognitively restructure our brains for greater stress relief and healing.
Helpful Tips for Patients & Families
Book: To Add A Miracle: A Mother’s Journey (FALL) into the World of Autoimmune Encephalitis and Autism
To Add A Miracle details with raw honesty, sprinkled with moments of humor and laughter, the dark and light shadows of the Jablon family’s journey; the story also highlights the tremendous strength of Yehuda’s siblings and selected “messengers of miracles” along the way.
With no filters, the story tells the author’s emotional journey as a mother in distress, facing piles of despair, culminating in a greater acceptance of the unacceptable, and a powerful recognition of the miracles that Yehuda has added to her family’s life.
While many books have been written highlighting the challenges of raising a child with disabilities, autoimmune encephalitis is a recently discovered and often misunderstood illness with a shocking onset.
The writing of To Add A Miracle was fueled by the author’s intense desire to spread awareness and hope, to strengthen mothers, fathers, families, and medical practitioners, as they bravely journey toward recovery or increased acceptance and strength.
Rebecca Jablon, IAES member and author of To Add A Miracle, tells the story of her sudden and dramatic fall into the world of autoimmune encephalitis, and resulting diagnosis of autism for her son, Yehuda.
- How can a mother accept an unknown or rare diagnosis?
- How can she grapple with an experimental and even further unknown treatment plan?
- How can a mother not throw up her hands in total despair when top neurologists eventually throw up their hands?
- How can she survive when she screams out, yet no one can answer, “What suddenly happened, overnight, to my five-year-old son?!!”
No stranger to the world of rare illnesses, Yehuda’s sudden overnight descent into the unknown rocked the author’s family. Who or What had stolen her son’s words, skills, and identity?
Most Popular Visuals
5 abilities that deteriorate after an acquired brain injury from AE
Featured AE Article
Use of anti-seizure medications in different types of autoimmune encephalitis: A narrative review
Seizures are the main manifestation of the acute phase of autoimmune encephalitis (AE). Anti-seizure medications (ASMs) play an important role in controlling seizures in AE patients, but there is currently a lack of consensus regarding the selection, application, and discontinuation of ASMs. This narrative review focuses on the use of ASMs in patients with AE driven by different antibodies.
Seizures in patients with cell surface antibody-mediated AE, especially anti-NMDAR AE, are often responsive to immunotherapy supplemented with ASMs, and most adults and children with anti-NMDAR AE do not require long-term treatment with ASMs. To evaluate the withdrawal time of ASMs in different types of AE patients, combining clinical manifestations with a scale should be considered in clinical practice.
If You Could Share 1 Thing with Your Neurologist, What Would It Be?
“If you could share one thing with your Neurologist, what would it be?”
This was the question “AE Tuesday Tries”, moderator Tessa McKenzie, IAES’ Chief Resilience Officer, ask Autoimmune Encephalitis patients and caregivers on one of her weekly Tuesday Twitter and Facebook posts. Responses poured in that were so insightful, we decided to create this video as a positive step forward in relationship-building with our doctors. by “normalizing the try.” Please share this video to raise awareness and subscribe to the IAES YouTube channel
Tuesday Tries gives members the time and tools to reflect on their Autoimmune Encephalitis journey, identify best practices in healing, and move forward better poised to leverage their strengths. Tessa provides prompts for reframing perceived failures, peer-to-peer validation of “wins, ” and opportunities for relationship building. IAES’ “Tuesday Tries” meets on Zoom on the last Tuesday of every month. The link to register for #AETuesdayTries is included in this video description.
Anti-LGI1 encephalitis: A family affair
- anti-LGI1 encephalitis is the most common form of limbic encephalitis in adults.
- We describe two sisters developing anti-LGI1 encephalitis late in their adulthood.
- Both our patients carried HLA-DRB1*07, HLA-DQA1*02:01 and HLA-DQB1*03:03.
- This haplotype has been strongly associated with anti-LGI1 encephalitis.
- The rarity of familial cases suggests the existence of other genetic contributors
The Importance of Cerebrospinal Fluid Investigation in First-episode Psychosis
Despite being a reliable first-hand source of data on neuronal pathology, cerebrospinal fluid (CSF) analysis remains an often-overlooked evaluation method in first-episode psychosis (FEP). In this paper, we begin by discussing the current role of CSF testing during FEP evaluation in clinical practice. Given that anti-N-methyl-D-aspartate receptor encephalitis presents with a clinical picture indistinguishable from FEP in >85% of cases, we debate the importance of testing for CSF neuronal antibodies in at least a subset of patients. Then, we continue by reviewing the most important recent studies which sought to identify potential CSF biomarkers in FEP caused by a primary psychiatric disorder. By circumventing traditional psychiatric classifications, characteristic biomarker profiles have the potential to become integral components of early diagnosis, disease stratification, treatment choice, and outcome prediction. Along these lines, we aim to provide an updated perspective on the importance of CSF investigation in FEP.
Currently, psychiatric disorders are classified predominantly by clinical syndromes. While being of great interest in psychiatric research, FEP remains a heterogenous and loosely characterized condition. However, the traditional classifications are expected to change as knowledge about the neurobiology of psychiatric disorders advances. Despite being a reliable first-hand source of data on neuronal pathology, CSF analysis remains an often-overlooked evaluation method in FEP. On one hand, the current clinical practice experiences a change, as neuronal antibody testing becomes readily available in most centers. On the other hand, the quest for searching characteristic biomarker profiles in pFEP will probably not know the same large-scale development and will remain limited to specialized centers. Nevertheless, the contribution of these findings will likely become crucial in the future. Beyond traditional psychiatric classifications, these biomarkers have the potential to become an integral component of early diagnosis, disease stratification, treatment choice, and outcome prediction in pFEP.
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on June 8th 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 May 30th, 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 AE Bling and Raise Awareness
Check out the two new t-shirt designs at the Autoimmune Encephalitis Warrior Store, the “Don’t Quit/Do IT #AEWarrior” and the colorful retro #AEWarrior design.
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.
On June 16th, 2022, the International Autoimmune Encephalitis Society and Tabitha Orth, IAES President, and Founder, officially became the 7,315th “point of light”. The award was founded by President George H.W. Bush in 1990.