Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
June 2023 2nd Edition
In this Issue~
- *Children’s Corner (for all ages): Retrospective Pediatric Cohort Study Validates NEOS Score and Demonstrates Applicability in Children with Anti-NMDAR Encephalitis, AE Warrior Coping Tools – What Helps Me
- *ABI Rehabilitation: Tactus Therapy app (Speech Therapy)
- *Helpful Tips for the AE Warrior: 11 Tips for Traveling with a Chronic Illness
- *Most Popular Visuals: Welcome to My World, Recovery Time
- *Featured AE Article: MIT neuroscientist: The No. 1 skill that sets people with ‘excellent memory’ apart from those who struggle—’it’s rare’
- *Video: The Misdiagnosis that Sent Me to Psychiatric Hospital
- *Clinician’s Corner: Autoimmune Encephalitis: A Physician’s Guide to the Clinical Spectrum Diagnosis and Management
- *Open Access: The diagnosis and treatment of catatonia
- *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
Children’s Corner
Retrospective Pediatric Cohort Study Validates NEOS Score and Demonstrates Applicability in Children with Anti-NMDAR Encephalitis
The NEOS score reliably predicted poor clinical outcome (mRS ≥3) in children in the first year after diagnosis (p = 0.0014) and beyond (p = 0.036, 16 months after diagnosis). A score adapted to the pediatric cohort by adjusting the cutoffs of the 5 NEOS components did not improve predictive power. In addition to these 5 variables, further patient characteristics such as the “Herpes simplex virus encephalitis (HSE) status” and “age at disease onset” influenced predictability and could potentially be useful to define risk groups. NEOS also predicted cognitive outcome with higher scores associated with deficits of executive function (p = 0.048) and memory (p = 0.043).
In conclusion, our data demonstrate the applicability of NEOS in children with NMDARE. This score, which can be easily calculated at bedside, could help estimate the clinical course also in children, thereby supporting their families, physicians, and therapists and identifying pediatric patients at risk who could benefit from intensified therapy and novel treatment strategies including individualized cognitive rehabilitation to improve long-term outcomes.
AE Warrior Coping Tools – What Helps Me
Print this list of coping skills out for your child and post it on your refrigerator so you can refer to it when your AE Warrior is having issues with coping and stress. This list is good for all ages and adds tools to your ‘toolbox’ when faced with difficult challenges or becoming overwhelmed.
ABI Rehabilitation From AE
Tactus Therapy app (Speech Therapy)
Each Tactus Therapy app is designed by an expert speech-language pathologist – based on researched techniques & years of clinical practice. Interactive & Motivating, it’s like having a therapist in your device, giving you feedback & measuring your progress. Get the practice you need from the comfort of your home on your schedule & within your budget. Daily practice with this app has been known to improve aphasia.
Helpful Tips for Patients & Families
11 Tips for Traveling with a Chronic Illness
Spring and Summer travel plans will be here before you know it. Traveling is a magical thing that can easily become a hassle for those who have to deal with daily medications or medical needs due to a chronic illness. This article has gathered some first-person tips that make a trip a little easier, even if a chronic disease is in tow.
Most Popular Visuals
Welcome To My World
Recovery Time
Featured AE Article
MIT neuroscientist: The No. 1 skill that sets people with ‘excellent memory’ apart from those who struggle—’it’s rare’
Exercising your memory regularly is the key to brain enhancement. Learn what you can do to improve your working memory (retaining information immediately after learning it) and long-term memory (recalling information more than a day after memorizing it). It is rare to be good at both types, Here are two simple brain exercises you can do every day to boost your working memory and long-term memory.
Video
The Misdiagnosis that Sent Me to Psychiatric Hospital
When Hannah Farrell lost her ability to speak and function, doctors thought she was mentally ill. In fact, her symptoms had a physical cause. Hannah had anti-NMDAR encephalitis. The most common type of AE.
Watch the BBC report about Hannah’s case. She is currently 5 and a half years into her battle to overcome her disease.
Clinician’s Corner
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.
Open Access
The diagnosis and treatment of catatonia
Catatonia is a severe neuropsychiatric syndrome that affects emotion, speech, movement and complex behavior. It can occur in a wide range of psychiatric and neurological conditions, including depression, mania, schizophrenia, autism, autoimmune encephalitis (particularly NMDAR encephalitis), systemic lupus erythematosus, thyroid disease, epilepsy and medication-induced and -withdrawal states. This concise guideline highlights key recommendations from the British Association for Psychopharmacology (BAP) Catatonia Guideline, published in April 2023. Important investigations may include neuroimaging, electroencephalography and assessment for neuronal autoantibodies in serum and cerebrospinal fluid. First-line treatment comprises benzodiazepines and/or electroconvulsive therapy. The benzodiazepine of choice is lorazepam, which is sometimes used in very high doses. Multidisciplinary working between psychiatrists and physicians is often essential. The main limitation of the guidelines is the low quality of the underlying evidence, comprising mainly small observational studies and case reports or series.
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on July 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 June 27th, 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 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
#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.
