Don’t Be Left Behind. Keep Up With THE HERD!
Selected Highlighted News in the field of Autoimmune
Encephalitis November 2020 1st edition
In this Issue~
* Announcements: National Family Caregiver Month, Survey on the impact of COVID-19 & autoimmune diseases, AE Warrior Store
*Children’s Corner: Clinical and MRI Outcome Predictors in Pediatric Anti-NMDA Receptor Encephalitis, Thanksgiving Word Search Puzzles
*Most Popular Visual of the Month: AE Treatment, Dose & Side effects, Autoimmune Encephalitis Infographic Poster, Stop. Someone in this house has a Weak Immune System poster
*COVID-19’s Impact on the AE Community: Age groups that sustain resurging COVID-19 epidemics in the United States, Medical group says ‘hundreds of thousands’ of COVID-19 deaths possible if ‘nation does not change its course’
*Most Popular Download: IVIG treatment what to Expect, How IVIG Works
*Featured AE Articles: Caregiver Tips, Neuropsychiatric symptoms and caregivers’ distress in anti-N-methyl-D-aspartate receptor encephalitis, The Dementia that can be Cured
*Clinician’s Corner: A Pounding Problem: A Case of Recurrent Headache Caused by Anti-NMDA Receptor Encephalitis
*COVID-19 Clinician’s Corner: Guillain-Barré syndrome: The first documented COVID-19–triggered autoimmune neurologic disease
*Open Access: Clinical, cognitive and neuroanatomical associations of serum NMDAR autoantibodies in people at clinical high risk for psychosis
National Family Caregiver Month – November 2020
November is National Caregiver’s Month. IAES is encouraging AE patients (i.e. AE Warriors) to send in written submissions sharing how much you appreciate your caregiver and what their support means to you to be featured in a special IAES Blog in ‘Tribute to Our Caregivers’.
AE patients would not enjoy the lives we have or make as much progress as we do if not for those who care for us and love us. Join us in singing their praise and raising your voice for our unsung heroes, our caregivers.
Help us shine a light on how much we appreciate our caregivers for the dedication and sacrifice they selflessly give 24/7.
E-mail your submission to IAES@autoimmune-encephalitis.org with the ‘Caregiver Tribute’ in the regarding line. We will do the editing and put them together.
Survey: Emotional, Social, and Physical Impact of COVID-19 on the Autoimmune Disease Community
The goal of my survey-based project is to analyze the emotional, social, and physical impact of COVID-19 on autoimmune disease patients as well as identifying effective coping strategies for people living with an autoimmune disease.
Important information to know before beginning the survey:
-The purpose of this study is to:
-gain insight into the emotional, social, and the physical impact of COVID-19 on autoimmune diseases.
-gain insight into how people attempt to cope with their autoimmune disease.
-share effective coping strategies with people struggling with an autoimmune disease.
-The survey will take approximately 10 minutes to complete.
-The survey is for anyone above the age of 7 years old.
-If the participant is younger than 18 years old they have to have parental consent.
-An asterisk* means that the question is required.
Raise Awareness by Shopping at the AE Warrior Store
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
Clinical and MRI Outcome Predictors in Pediatric Anti-NMDA Receptor Encephalitis
This Open Access article is recently published. Interpretation: Children with NMDARE exhibit significant brain volume loss and failure of age-expected brain growth. Abnormal MRI findings, a clinical presentation with sensorimotor deficits, and a treatment delay >4 weeks are associated with worse clinical outcome. These characteristics represent promising prognostic biomarkers in pediatric NMDARE.
Thanksgiving Word search puzzles for Cognitive Exercise and Rehabilitation
Most Popular Download
AE Treatments, Dose, Frequency, Side Effects & Lab Monitoring
Autoimmune Encephalitis Infographic Poster
Poster: Stop Someone in This House Has a Weak Immune System
COVID-19’s impact on the AE Community
Age groups that sustain resurging COVID-19 epidemics in the United States
Conclusions: 1. “We estimate by November 24 2020 a 253.7% increase in infections among children aged 0-11, and 24 excess COVID-19 attributable deaths among children aged 0-11, resulting in pediatric COVID-19 attributable mortality figures that are similar to pediatric influenza-like mortality. The forecasts further estimate 6,181 excess COVID-19 attributable deaths in the total population, which is a 12.6% increase compared to the continued school closure scenario, by November 24, 2020.” 2. “Adults aged 20-49 are a main driver of the COVID-19 epidemic in the United States; yet, in areas with resurging epidemics, opening schools will lead to more COVID-19-aƩributable deaths, so more targeted interventions in the 20-49 age group could bring epidemics under control, avert deaths, and facilitate the safe reopening of schools.”
Medical group says ‘hundreds of thousands’ of COVID-19 deaths possible if ‘nation does not change its course’
“Despite working together as a nation to ‘flatten the curve,’ the United States is experiencing troubling new waves of infection. Instead of declining, the numbers of new cases, hospitalizations, and deaths, especially among vulnerable groups and communities of color, are growing rapidly. Particularly worrisome are the increases in infections among people in their 20s and 30s, who play a pivotal role in spreading the virus to older and other vulnerable populations,” the group said.
Most Popular Visual~
IVIG Treatment and What to Expect
How IVIG Works
Featured AE Articles~
Neuropsychiatric symptoms and caregivers’ distress in anti-N-methyl-D-aspartate receptor encephalitis
The Dementia that can be Cured
Dr. Irani at Oxford and some of our cherished AE experts at Mayo Clinic Rochester, MN, Dr. Sean Pittock and Eoin Flannagan, discuss Autoimmune Dementia and share the stories of two cases. Andrew with LGI1 AE and Pippa with anti-NMDAr AE.
Dementia is not just one disease – it has more than 200 different subtypes. Over the past decade, neurologists have become increasingly interested in one particular subtype, known as autoimmune dementia. In this condition, the symptoms of memory loss and confusion are the result of brain inflammation caused by rogue antibodies – known as autoantibodies – binding to the neuronal tissue, rather than an underlying neurodegenerative disease. Crucially this means that unlike almost all other forms of dementia, in some cases it can be cured, and specialist neurologists have become increasingly adept at both spotting and treating it.
The main telltale clue was the speed of onset, one of the key distinguishing features of autoimmune dementia. “The symptoms usually come on very quickly,” Irani says. “Over a few weeks or months, patients develop memory problems and change their behavior and personality. Patients with neurodegenerative forms of dementia can develop movement disorders or seizures, but this typically happens later in the illness once degeneration has set in. In autoimmune dementia, these are early problems.”
A Pounding Problem: A Case of Recurrent Headache Caused by Anti-NMDA Receptor Encephalitis
COVID-19 Clinician’s Corner
Guillain-Barré syndrome: The first documented COVID-19–triggered autoimmune neurologic disease
Objective: To present the COVID-19–associated GBS, the prototypic viral-triggered autoimmune disease, in the context of other emerging COVID-19–triggered autoimmunities, and discuss potential concerns with ongoing neuroimmunotherapies.
Results: Collective data indicate that in this pandemic any patient presenting with an acute paralytic disease-like GBS, encephalomyelitis, or myositis-even without systemic symptoms may represent the first manifestation of COVID-19. Anosmia, ageusia, other cranial neuropathies and lymphocytopenia are red flags enhancing early diagnostic suspicion. In Miller-Fisher Syndrome, ganglioside antibodies against GD1b, instead of QG1b, were found; because the COVID-19 spike protein also binds to sialic acid-containing glycoproteins for cell-entry and anti-GD1b antibodies typically cause ataxic neuropathy, cross-reactivity between COVID-19–bearing gangliosides and peripheral nerve glycolipids was addressed. Elevated Creatine Kinase (>10,000) is reported in 10% of COVID-19–infected patients; two such patients presented with painful muscle weakness responding to IVIg indicating that COVID-19–triggered NAM is an overlooked entity. Cases of acute necrotizing brainstem encephalitis, cranial neuropathies with leptomeningeal enhancement, and tumefactive postgadolinium-enhanced demyelinating lesions are now emerging with the need to explore neuroinvasion and autoimmunity. Concerns for modifications-if any-of chronic immunotherapies with steroids, mycophenolate, azathioprine, IVIg, and anti-B-cell agents were addressed; the role of complement in innate immunity to viral responses and anti-complement therapeutics (i.e. eculizumab) were reviewed.
Conclusions: Emerging data indicate that COVID-19 can trigger not only GBS but other autoimmune neurological diseases necessitating vigilance for early diagnosis and therapy initiation. Although COVID-19 infection, like most other viruses, can potentially worsen patients with pre-existing autoimmunity, there is no evidence that patients with autoimmune neurological diseases stable on common immunotherapies are facing increased risks of infection.
Clinical, cognitive and neuroanatomical associations of serum NMDAR autoantibodies in people at clinical high risk for psychosis
Serum neuronal autoantibodies, such as those to the NMDA receptor (NMDAR), are detectable in a subgroup of patients with psychotic disorders. It is not known if they are present before the onset of psychosis or whether they are associated with particular clinical features or outcomes. In a case-control study, sera from 254 subjects at clinical high risk (CHR) for psychosis and 116 healthy volunteers were tested for antibodies against multiple neuronal antigens. Preliminary phenotypic analyses revealed that within the CHR sample, the NMDAR antibody seropositive subjects had higher levels of current depression, performed worse on the Rey Auditory Verbal Learning Task (p < 0.05), and had a markedly lower IQ (p < 0.01). NMDAR IgGs were not more frequent in subjects who later became psychotic than those who did not.
In this study, NMDAR antibodies did not predict transition to psychosis, as defined by operationalized criteria, or nonremission from the CHR state. NMDAR antibody seropositivity was however associated with a deterioration in disability-associated functioning, short of transition and indeed greater antibody titre was associated with greater deterioration in function, overall suggesting that NMDAR antibody serostatus should be further evaluated as a predictive marker of functional outcome.
AE Trivia Playing Cards
The perfect companion for patients, Caregivers & Therapist
Visit our AE Warrior store to see a variety of products designed to raise AE awareness and support research.
The proceeds from your purchase will immediately support autoimmune encephalitis patients, caregivers, and families who are walking this difficult journey.
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.
Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may 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.