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Selected Highlighted News in the field of Autoimmune Encephalitis~ April 2021 2nd Edition
In this Issue~
AE Study 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.
AE Warrior, Elly Knaggs, Makes News In Australia
Neuroimaging manifestations in children with SARS-CoV-2 infection: a multinational, multicenter collaborative study
38 children with neurological disease related to SARS-CoV-2 infection were identified. Recurring patterns of disease were identified, with neuroimaging abnormalities ranging from mild to severe. The most common imaging patterns were postinfectious immune-mediated acute disseminated encephalomyelitis-like changes of the brain (16 patients), myelitis (eight patients), and neural enhancement (13 patients). Cranial nerve enhancement could occur in the absence of corresponding neurological symptoms. Splenial lesions (seven patients) and myositis (four patients) were predominantly observed in children with multisystem inflammatory syndrome. Cerebrovascular complications in children were less common than in adults. Significant pre-existing conditions were absent and most children had favourable outcomes. However, fatal atypical CNS co-infections developed in four previously healthy children infected with SARS-CoV-2.
Acute-phase and delayed-phase SARS-CoV-2-related CNS abnormalities are seen in children. Recurring patterns of disease and atypical neuroimaging manifestations can be found and should be recognized being as potentially due to SARS-CoV-2 infection as an underlying etiological factor. Studies of pediatric specific cohorts are needed to better understand the effects of SARS-CoV-2 infection on the CNS at presentation and on long-term follow-up in children.
Pediatric Autoimmune Encephalitis Fact Sheet
ABI Rehabilitation From AE
Spring Word Scrambles
Useful Tips for Patients & Families
Keep a Journal
USA Disabled Students can have their Student Loans Discharged
Most Popular Download
IVIG Side Effects Chart
Are you having IVIG?
We Are #AEWarriors
COVID-19’s Impact on the AE Community
6-month neurological and psychiatric outcomes in 236 379 survivors of COVID-19: a retrospective cohort study using electronic health records
*One of the big take-homes from this paper is that in this much larger sample, an association between COVID-19 infection and psychosis (both new-onset and exacerbations) emerges, that wasn’t in the previous, smaller dataset from these authors.
Neurological and psychiatric sequelae of COVID-19 have been reported, but more data are needed to adequately assess the effects of COVID-19 on brain health. We aimed to provide robust estimates of incidence rates and relative risks of neurological and psychiatric diagnoses in patients in the 6 months following a COVID-19 diagnosis.
Among 236 379 patients diagnosed with COVID-19, the estimated incidence of a neurological or psychiatric diagnosis in the following 6 months was 33·62% with 12·84% receiving their first such diagnosis.
This study provides evidence for substantial neurological and psychiatric morbidity in the 6 months after COVID-19 infection. Risks were greatest in, but not limited to, patients who had severe COVID-19.
Featured AE Article~
Encephalitis: ‘Friendly fire’ in my brain saw me sectioned in error
IAES member and model, Lucy Dawson was 21 when she was sectioned in error due to an illness that was difficult to diagnose.
Lucy has been a strong advocate throughout her AE journey with anti-NMDAr AE. This article includes a 28-minute audio interview where Lucy tells her story.
Lucy was in her final year studying criminology at the University of Leicester in 2016 when she became ill and underwent a complete personality change.
On her 21st birthday, a month after she was admitted to hospital, doctors told her parents she would have to undergo ECT (electroconvulsive therapy) or she would die.
During her stay at the psychiatric hospital, Lucy had a seizure and fell from her bed landing on a radiation pipe. The third degree burns she received from being there undiscovered for such a long period of time left her with an additional disability. Today Lucy is a strong advocate for AE and is enjoying a successful modeling career.
The Insula Is a Hub for Functional Brain Network in Patients With Anti-N-Methyl-D-Aspartate Receptor Encephalitis
This research aimed to assess changes in the functional brain network in patients with anti-NMDAR encephalitis and whether these changes lead to cognitive impairment.
Conclusion: This research describes topological abnormalities in the functional brain network in anti-NMDAR encephalitis. These results will be conducive to understand the structure and function of the brain network of patients with anti-NMDAR encephalitis and further explore the neuropathophysiological mechanisms.
COVID-19 Clinician’s Corner
Post-acute COVID-19 syndrome
Residual Fatigue and Cognitive Deficits in Patients After LGI-1 Antibody Encephalitis
Fatigue is a major residual feature in LGI1 antibody patients. Inspired by seeing >100 of these patients, and hearing their stories.
Leucine-rich glioma-inactivated 1 antibody encephalitis (LGI1-Ab-E) typically affects older men who present with prominent amnesia and frequent seizures and often shows a marked short-term improvement with immunotherapies. In particular, seizure cessation occurs within just a few weeks.
However, only traditional cognitive domains have been investigated as longer-term outcomes, with improvements in cognition described as “not good enough.”
Here, motivated by patient feedback and our clinical observations, we aimed to quantify the residual deficits observed after LGI1-Ab-E across several functional domains.
The data here indicate that despite a “good” mRS, several long-term residual deficits remain: across domains of cognition, mood, and fatigue, with a significant effect on employment status. Our cohort’s mean mRS was comparable with other LGI1-Ab-E studies, suggesting this traditional outcome measure captures only limited long-term morbidity in multiple studies. Fatigue was the most commonly impaired domain in our cohort, a novel finding in LGI1-Ab-E. This observation is closely reflected by the many patients in our clinic who volunteer fatigue as a major residual symptom. Also, it parallels findings in pediatric N-methyl-D-aspartate receptor antibody encephalitis, where fatigue is associated with quality of life.
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.
AE Warrior Store
Puzzles Featuring Original Art by AE Warriors
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.