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Selected Highlighted News in the field of Autoimmune Encephalitis~ March 2021 1st Edition
In this Issue~
- *Announcements: AE Speakers Series Webinar Recordings Now Available, AE Studies Seek Your Participation, 3rd Annual Virtual Art Show, This is Our Time Awareness Video
- *AE Warrior Store: Puzzles featuring original art by AE patients
- *Children’s Corner (for all ages): What are Child Life Specialists?, Association of Rituximab Use With Adverse Events in Children, Adolescents, and Young Adults
- ABI Rehabilitation: Mental Movement Cognitive Exercise Worksheets
- Useful Tips for the AE Warrior: State Waiver Programs, Patient/Caregiver Resource Guide for AE
- Most Popular Downloads: AE infographic now available in English, Spanish & German
- *COVID-19’s Impact on the AE Community: COVID-19 May Hide in Brains and Cause Relapses, Autoimmune limbic encephalitis related to SARS-CoV-2 infection: Case-report and review of the literature
- *Featured AE Article: Clinical spectrum of high-titre GAD65 antibodies
- *Clinician’s Corner: AQP4-IgG-seropositive neuromyelitis optica spectrum disorder (NMOSD) coexisting with anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis: A case report and literature review
- *COVID-19 Clinician’s Corner: Why is COVID-19 less severe in children? A review of the proposed mechanisms underlying the age-related difference in severity of SARS-CoV-2 infections
- *Open Access: Autoimmune encephalitis with psychiatric features in adults: historical evolution and prospective challenge
Webinar Recordings From Speakers Series Now Available
All five webinars in our AE Awareness Month Speakers Series have been a rousing success. IAES is so pleased to have gathered experts of such caliber to present on the key areas of Autoimmune Encephalitis. The five speakers each discuss a topic, that when combined, provides the audience with a completed education of autoimmune encephalitis. Providers and patients alike have hailed this series as the best they have attended on autoimmune encephalitis. Recordings are available on the AE Speakers page and within the IAES video library.
Two AE Studies Seek Your Participation
AE Patients Residing in Australia ~Your Participation is Needed
Dr. Mastura Monif, a member of the IAES Medical Advisory board who is located in Australia, is conducting a study on autoimmune encephalitis and seeks patient participation.
Leads The Australian Autoimmune Encephalitis Consortium Project that consists of up to 13 health and academic centers around the country bringing national experts together to tackle the issue of Autoimmune Encephalitis facing the Australian population.
The group has formed the Australian Autoimmune Encephalitis Consortium bringing together national experts from 4 states around the country to tackle the issue of AE facing the Australian Health sector. With this study, they hope to produce the largest cohort of retrospective and prospective cases of AE in Australia with the aim of gaining a better understanding of disease trajectory as well as identifying key clinical, electroencephalogram/seizure phenotype, cellular and biochemical, radiological & cognitive biomarkers of disease onset, progression & outcome. This study brings together a collaborative & multidisciplinary team of neurologists, neuroimmunologists, epilepsy experts, neuropsychologists, neuroradiologists, psychiatrists, and neuroscientists. The findings are hoped to generate extensive data regarding AE as well as the production of clinical guidelines for early identification, diagnosis & treatment of these devastating conditions.
Caregivers/Family Members of AE Patients Residing in the United Kingdom ~Research Recruitment Underway
Ellie Johnson, a student undertaking the BSc (Hons)Psychology program at the University of Salford is looking for your assistance. As part of her course, she is undertaking a research study titled: Investigating how families cope with the social and emotional impacts of a diagnosis of encephalitis: An Interpretive Phenomenological Analysis
Ms. Johnson is looking to research the experiences and impacts of a diagnosis of encephalitis among the families and carers of patients. By using interpretive phenomenological analysis, she wishes to understand the families’ lived experience and how they coped with this diagnosis. She hopes that this will generate an understanding of the support needs of families and carers.
Any data collected will remain confidential. Ms. Johnson has gained ethical approval for the study from the University of Salford, School of Health and Society Taught Ethics Committee.
3rd Annual Virtual Art Show Gains Global Attention
This is Our Time AE Awareness Video 2021
AE Warrior Store
Puzzles Featuring Original Art by AE Warriors
The Association of Child Life Professionals
Association of Rituximab Use With Adverse Events in Children, Adolescents, and Young Adults
Question Is the use of rituximab for young people associated with short- or long-term adverse events?
Findings This cohort study identified 468 patients younger than 21 years receiving rituximab for more than 25 indications, among whom infectious and noninfectious adverse events were common. The majority of these events were mild, but a small population experienced prolonged immune suppression and severe infections following even single courses of rituximab.
Meaning Findings suggest that rituximab appears to be well tolerated among young people, but the observed frequent infections and prolonged recovery of B lymphocyte numbers highlight the need for better strategies to mitigate infection risk in this population.
ABI Rehabilitation From AE
Cognitive Mental Movement Exercises
Here is a new set of cognitive rehabilitation worksheets, packet #30. They give AE patients the ability to practice and work on cognitive skills impacted by brain injury caused by autoimmune encephalitis. Courtesy of our friends at Happy Neuron.
Mental movement is a complex cognitive skill needed in order to plan things out. It not only helps with visual-spatial skills but with the ability to organize information, make mental-visual comparisons, and overall decisions based upon order or comparison.
In this worksheet, you receive 4 exercises to use to practice strategies related to mental movement. Whether it’s mentally moving a ball from one hoop to another, remembering where objects are placed, using language clues and space markers to complete a sentence, and/or mentally reflecting a pattern this packet has all of that and more. You will be exposed to different task requirements, all sharing the underlying component of mentally moving objects. This worksheet challenges: working memory, attention, visual-spatial skills, and language.
Useful Tips for Patients & Families
State Waiver Program ~ USA
The First Aid Tool Kit
A Patient/Caregiver Resource Guide for Autoimmune Encephalitis
The “First-Aid Tool Kit” is a key patient resource guide to managing your care written by IAES advocates for anyone touched by autoimmune encephalitis.
Navigating your medical care when you have been diagnosed with an under-recognized neuroimmunological disease that presents with psychiatric symptoms, has challenging pitfalls. This pro-active preparedness guide is designed to assist you through that unique journey.
This valuable guide is FREE and we believe it to be a MUST download to help you advocate for yourself and navigate the many challenges faced with a rare disease.
Please keep it with you. We hope it helps in times of crisis and in your daily life. The information contained within may save your life or prevent psychiatric misdiagnosis.
Most Popular Download
AE Infographic Poster Now Available in English, Spanish & German
COVID-19’s Impact on the AE Community
COVID-19 May Hide in Brains and Cause Relapses
Autoimmune limbic encephalitis related to SARS-CoV-2 infection: Case-report and review of the literature
Case report: Two weeks after the onset of COVID-19 infection, a 74-year-old woman presented with subacute confusion and focal motor seizures with impaired awareness, starting from the left temporal region. The cerebrospinal fluid analysis revealed hyperproteinorrachia. Brain MRI showed bilateral T2/FLAIR hyperintensities in both hippocampi and total-body PET/TC scan revealed hypermetabolism in basal ganglia bilaterally. A diagnosis of autoimmune LE was made. Thus, high-dose corticosteroids and antiseizure medications were started, with a marked improvement of neurological conditions.
Conclusion: A very limited number of autoimmune LE have been described until now. It is important to monitor neurological symptoms in COVID-19 patients and to consider the possibility of an autoimmune LE, in particular when altered mental status and seizures appear late in the disease course. This allows to promptly start the appropriate treatments and avoid unnecessary delays.
Featured AE Article~
Clinical spectrum of high-titre GAD65 antibodies
Objective To determine clinical manifestations, immunotherapy responsiveness, and outcomes of glutamic acid decarboxylase-65 (GAD65) neurological autoimmunity.
Methods We identified 323 Mayo Clinic, patients with high-titre (>20 nmol/L in serum) GAD65 antibodies out of 380 514 submitted anti-GAD65 samples (2003–2018). Patients classified as having GAD65 neurological autoimmunity after chart review were analyzed to determine disease manifestations, immunotherapy responsiveness, and predictors of poor outcome (modified Rankin score >2).
Interpretation High-titre GAD65 antibodies were suggestive of, but not pathognomonic for GAD65 neurological autoimmunity, which has a discrete core and secondary manifestations. SPSD was most likely to respond to immunotherapy, while epilepsy was the least immunotherapy responsive. Complete immunotherapy response was rare. Serum GAD65 antibody titre >500 nmol/L and cerebellar ataxia predicted poor outcome.
AQP4-IgG-seropositive neuromyelitis optica spectrum disorder (NMOSD) coexisting with anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis: A case report and literature review
•Patients with overlapping AQP4-IgG-seropositive NMOSD and anti-NMDAR encephalitis with positive NMDAR antibodies in the CSF are rare but should not be ignored.
•When NMOSD patients show unusual symptoms (abnormal behavior, prominent psychiatric manifestations, cognitive dysfunction, autonomic dysfunction), or atypical supratentorial lesions, the coexistence of anti-NMDAR encephalitis should be considered.
•Compared to simple anti-NMDA receptor encephalitis, patients with co-morbidities require stronger immunotherapy and second-line immunosuppressive therapy must be initiated as soon as possible.
COVID-19 Clinician’s Corner
Why is COVID-19 less severe in children? A review of the proposed mechanisms underlying the age-related difference in severity of SARS-CoV-2 infections
Autoimmune encephalitis with psychiatric features in adults: historical evolution and prospective challenge
|This review aims to delineate the psychiatric spectrum of autoantibody-associated autoimmune encephalitis over time through its discoveries of antibodies. Autoimmune encephalitis is a disorder that can dynamically alter its phenotypical appearance over time. It is often characterized by an initial psychiatric manifestation or reveals predominant or isolated psychiatric features. The aim of this review is to depict the historic evolution of the published psychiatric phenomenology of autoimmune encephalitis.|
AE Trivia Playing Cards
The perfect companion for patients, Caregivers & Therapist
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
Ways to Shop & Support IAES
Have you wanted to support IAES, autoimmune encephalitis awareness, and the AE Warrior that you love?
Have you found our services helpful? Do you want to make sure patients are identified early and that they and their loved ones receive the best help possible during this difficult journey?
Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded that you can give $1 to IAES.
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.
The need for our services has increased exponentially. This simple act of kindness, will support the work we do and advance our ability to service the community.
International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency. IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344
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.