Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
March 2023 2nd Edition
In this Issue~
- *Children’s Corner (for all ages): Zebra Dot-to-Dot, Immunological causes of obsessive-compulsive disorder: is it time for the concept of an “autoimmune OCD” subtype?
- *ABI Rehabilitation: IAES Zebra Logo Maze Puzzle – In Recognition of Brain Injury Awareness Month
- *Helpful Tips for the AE Warrior: Autoimmune Encephalitis and Related Disorders of the Nervous System, 3 ways that pets can improve cognitive health for older adults
- *Most Popular Visuals: 4 My Friend is Sick What Can I Do?, AE Warrior Poster
- *Featured AE Article: State of Care for Autoimmune Encephalitis and the ExTINGUISH Trial of Inebilizumab
- *Video: “See Me” Brain Injury Awareness Month
- *Clinician’s Corner: Fluctuations in quality of life and immune responses during intravenous immunoglobulin infusion cycles
- *Open Access: Autoimmune Encephalitis: A Physician’s Guide to the Clinical Spectrum Diagnosis and Management
- *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
Children’s Corner
Zebra Dot-to-Dot
Immunological causes of obsessive-compulsive disorder: is it time for the concept of an “autoimmune OCD” subtype?
Obsessive-compulsive disorder (OCD) is a highly disabling mental illness that can be divided into frequent primary and rarer organic secondary forms. Its association with secondary autoimmune triggers was introduced through the discovery of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). Autoimmune encephalitis and systemic autoimmune diseases or other autoimmune brain diseases, such as multiple sclerosis, have also been reported to sometimes present with obsessive-compulsive symptoms (OCS). Subgroups of patients with OCD show elevated proinflammatory cytokines and autoantibodies against targets that include the basal ganglia.
Red flag signs for “autoimmune OCD” could include (sub)acute onset, unusual age of onset, atypical presentation of OCS with neuropsychiatric features (e.g., disproportionate cognitive deficits) or accompanying neurological symptoms (e.g., movement disorders), autonomic dysfunction, treatment resistance, associations of symptom onset with infections such as group A streptococcus, comorbid autoimmune diseases or malignancies. Clinical investigations may also reveal alterations such as increased levels of anti-basal ganglia or dopamine receptor antibodies or inflammatory changes in the basal ganglia in neuroimaging. Based on these red flag signs, the criteria for a possible, probable, and definite autoimmune OCD subtype are proposed.
ABI Rehabilitation From AE
IAES Zebra Logo Maze Puzzle – In Recognition of Brain Injury Awareness Month
In recognition of Brain Injury Awareness Month, we challenge you to solve our IAES zebra logo maze puzzle.
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
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.
3 ways that pets can improve cognitive health for older adults
Further research is needed to determine the relationship between pet ownership and cognitive health, but what scientists know so far is promising for pet owners! Since pets can decrease stress, provide companionship, and encourage physical activity, it’s no surprise that our furry friends can benefit our cognitive function.
Most Popular Visuals
My Friend is Sick, What Can I Do?
AE Warrior Poster
Featured AE Article
State of Care for Autoimmune Encephalitis and the ExTINGUISH Trial of Inebilizumab
On World Encephalitis Day, Gregory Day, MD, MSc, MSCI, FAAN, a neurologist at Mayo Clinic in Jacksonville Florida, talked about the current state of treating autoimmune encephalitis and the significance of the ExTINGUISH trial.
IAES, AE Alliance, and the anti-NMDAr Foundation are all spreading the word about the importance of this trial – the first of its kind. The treatment up until now has essentially been governed by clinical consensus.
Currently, different centers do different things. Some people advocate that we should be providing tons of treatment upfront, others say that we should be spacing it out using things more sparingly. They recognize that all our treatments can have side effects as well. The reality is that if we look at our experience with this disease, the literature, we’re recognizing more and more cases earlier, and since 2013, when one of the key case series came out advocating for the use of rituximab, we’re using rituximab a lot more frequently and a lot earlier in the disease course. What’s coming next and what’s forthcoming really leads to the need for this clinical trial. If we recognize that outcomes are good, we want to follow that by saying they’re not great. We can do better; we should do better. We definitely need drugs and agents that are FDA approved for this purpose to help advise and know when we should be starting therapy with truly high-quality evidence that comes from randomized controlled trials.
But even understanding all of that, we’re not seeing improvements in outcomes from all our patients. We still have good outcomes in the majority of patients and that’s something to be celebrated, but we’re missing our opportunity for great outcomes. We have not moved the needle, even though we’re using those agents that are available to us earlier in the disease process.
If you are newly diagnosed and 18 or older please talk to your doctor about this trial.
*All participants will be given standard “first-line” immunotherapies before randomization. Then, cyclophosphamide IV rescue therapy will be given to patients 6 weeks after if they fail to respond to initial treatment.
*See ExTINGUISH trial below.
Video
“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.
Clinician’s Corner
Fluctuations in quality of life and immune responses during intravenous immunoglobulin infusion cycles
In summary, in this study, the Quality of life (QOL) “wear off effect” following IVIG infusion was confirmed, and although several potentially relevant factors were identified, a clear role for these factors in this effect remain elusive. In this cohort, increases in Treg levels and various serum chemokines and cytokines did not correlate with reported improvement and subsequent deterioration in QOL throughout the IVIG cycle. Nonetheless, novel findings regarding replacement-dose IVIG infusions were discovered particularly relating to the differential response of IVIG-naïve vs. IVIG-experienced subjects. This constellation of findings provides a framework for future work exploring the non-infectious physiologic alterations induced by IVIG infusions and how they relate to the feeling of well-being among the highly burdened primary immunodeficiency diseases (PIDD) patient population.
Open Access
Autoimmune Encephalitis: A Physician’s Guide to the Clinical Spectrum Diagnosis and Management
The spectrum of autoimmune encephalitis continues to rapidly expand with the growing discovery of neuronal autoantibodies. Early recognition and treatment are paramount to improve outcomes and achieve complete recovery from these debilitating, occasionally life-threatening, disorders. Early diagnosis, however, can be challenging due to the heterogeneity of the clinical presentations. It requires a high index of clinical suspicion and a low threshold for paired serum/CSF assays, particularly in the presence of clinical red flags suggestive of immune origin. This review aimed to provide primary care physicians and hospitalists who, together with psychiatrists, are often the first port of call for individuals presenting with new-onset neuropsychiatric symptoms, with an up-to-date data and evidence-based approach for the diagnosis and management of individuals with neuropsychiatric disorders of suspected autoimmune etiologies.
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on April 13th 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 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
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
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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. |
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.
