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Selected Highlighted News in the field of Autoimmune Encephalitis~ March 2021 2nd Edition
In this Issue~
- *Announcements: AE Speakers Series Webinar Recordings Now Available, AE Study in Australia seeks your participation
- *Children’s Corner (for all ages): Travel from home: 13 virtual museums and galleries to tour, St. Patrick’s Day Word Search
- *ABI Rehabilitation: Visual-spatial Skills Worksheets, 7 Surprising Ways Puzzles Are Good for Your Brain
- *Useful Tips for the AE Warrior: 6 Easy Ways to Manage and Organize Your Medication
- *Most Popular Downloads: Encephalitic Presentation, 5 Types of AE and What is seen in ICU
*COVID-19’s Impact on the AE Community: Interim Public Health Recommendations for Fully Vaccinated People, MOG-associated encephalitis following SARS-COV-2 infection
- *Featured AE Article:
Normally Sharp, He Was Chronically Confused. What Was Going On?
- *Clinician’s Corner: Autoimmune encephalitis: proposed best practice recommendations for diagnosis and acute management
- *COVID-19 Clinician’s Corner: COVID-19 May Hide in Brains and Cause Relapses
- *Open Access: Characteristics and outcome‐related factors of seizure at the first onset of autoimmune encephalitis: A retrospective study
- *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
- *AE Warrior Store: Puzzles featuring original art by AE patients
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. |
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. |
Children’s Corner
Travel from home: 13 virtual museums and galleries to tour
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St. Patrick’s Day Word Search
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ABI Rehabilitation From AE
Visual-spatial Skills Worksheets
Are you working on your cognitive rehabilitation from AE? Our friends at HappyNeuron Pro have released its 32nd worksheet packet! Visual-spatial skills are needed for math, being able to locate ourselves on a map, and being able to manipulate objects in our everyday lives. Sometimes, brain injury from AE can cause people to have difficulty with visual-spatial skills. Packet #32 Visual-spatial skills are needed for math, being able to locate ourselves on a map, and being able to manipulate objects in our everyday lives. In this packet, you will find 4 exercises that target visual-spatial skills. Download it now and start working on those skills. |
7 Surprising Ways Puzzles Are Good for Your Brain
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Useful Tips for Patients & Families
6 Easy Ways to Manage and Organize Your Medication
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Most Popular Download
5 Types of AE and What is seem in ICU
Encephalitic Presentation
COVID-19’s Impact on the AE Community
Interim Public Health Recommendations for Fully Vaccinated People
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MOG-associated encephalitis following SARS-COV-2 infection
This is a case report of a 23-year old man with a history of childhood non-febrile seizures, presented to the hospital because of cognitive slowing and personality changes. Five weeks prior, he gradually developed a moderate but nearly constant, left-sided headache associated with dysesthesias. During this timeframe, he had known exposure to SARS-CoV-2 infected coworkers. This case expands the spectrum of parainfectious neurological consequences associated with SARS-CoV-2 infection and highlights possible links between SARS-CoV-2 and autoimmune neurologic disease. A variety of neurologic manifestations of COVID-19 infections have been reported. Here, we present a case of steroid-responsive MOG-antibody-associated encephalitis, characterized by cognitive decline, headaches, fever, unilateral FLAIR-hyperintensities, and leptomeningeal enhancement, that occurred in the setting of a recent COVID-19 infection. |
Featured AE Article~
Normally Sharp, He Was Chronically Confused. What Was Going On?
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Clinician’s Corner
Autoimmune encephalitis: proposed best practice recommendations for diagnosis and acute management
This is a two-part article.
The first part of the best practice recommendations, the authors covered the clinical presentation, diagnostic workup, and acute management of AE guided by published studies and the results of the AEACN survey providing updated recommendations for the management of patients with suspected AE. The second part focuses on bridging therapy, symptomatic treatment, and maintenance immunotherapy. A discussion of the limitations will be presented at the end of the second part.
A summary of the best practice recommendations for AE diagnosis and acute management is presented in box 1.
We are grateful to Autoimmune Encephalitis Alliance for their dedication to overseeing this three-year project.
COVID-19 Clinician’s Corner
COVID-19 May Hide in Brains and Cause Relapses
The coronavirus may remain in people’s brains after infection and trigger relapses in patients who thought they had recovered, according to a new study published in the journal Viruses. The research team found that the virus was located in the brains of mice at a level that was 1,000 times higher than in any other part of the body. Viral loads in the lungs began to drop after three days but remained high in the brain on the fifth and sixth days after infection, which is when the disease became more severe. “Once it infects the brain, it can affect anything because the brain is controlling your lungs, the heart, everything,” he said. “The brain is a very sensitive organ. It’s the central processor for everything.” |
Characteristics and outcome‐related factors of seizure at the first onset of autoimmune encephalitis: A retrospective study
Seizure outcome of autoimmune encephalitis (AE) varies from seizure‐free to refractory epilepsy, and the associated factors remain unclear. We aimed to describe seizure characteristics, identify seizure outcome‐related factors and discuss the medication strategy of antiepileptic drugs (AEDs) at the first onset of AE.
5 CONCLUSIONS
In the acute phase of AE, seizure characteristics may be considered in the selection and utilization of AEDs. Onset with seizure and status epilepticus (SE) occurrence may lead to a poor seizure outcome, while human gamma globulin administration and low antibody titer may contribute to a good seizure outcome. For patients who have achieved seizure‐free status in the acute phase, the factors mentioned above may be considered in the withdrawal strategy of AEDs after the acute phase. Early identification of patients qualified to discontinue AEDs can avoid the additional adverse effects and high costs of AEDs, thereby easing the treatment burden borne by patients.
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
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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. |
During the COVID-19 pandemic, it is vitally important that you #StayHome and practice #SocialDistancing. Grocery shopping, as well as all shopping, should be done online.
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.
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.
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.
