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theherd - THE HERD August 2020~ 1st edition

Don’t Be Left Behind. Keep Up With THE HERD!

Selected Highlighted News in the field of Autoimmune

Encephalitis August 2020 1st edition

In this Issue~


    •  Announcements: Ask Congress to Protect Patients from Surprise Medical Billing!, AE Warrior Store, AE Trivia Playing Cards
    • Children’s Corner: Homeschooling and meeting IEP Goal during COVID-19
    • Most Popular Visual of the Month: It is the Moment between Inhale and Exhale
    • COVID-19’s Impact on the AE Community: Childhood interrupted, Research shows the most and least effective materials for face masks
    • Most Popular Download: What Brain Injury Survivors Want you to Know
    • Clinician’s Corner: Not Your Average Seizure: A Case of N-Methyl-D-Aspartate Receptor Encephalitis and Review of Literature (recommended for patients and parents)
    • COVID-19 Clinician’s Corner: 55% of coronavirus patients still have neurological problems three months later
    • Open Access: Video- Antibody Prevalence in Epilepsy and Encephalopathy (APE2) Score


Too often, rare disease patients receive a surprise medical bill for the treatment they expected to be covered by insurance. It’s a harmful practice that throws millions of Americans into the financial crisis and the problem is widespread. More than half of Americans have received a surprise medical bill, but you can help change that. Please support the rare disease community by contacting your Members of Congress today!

AE Warrior Caregiver
AE Warrior-what's your superpower-mask

IAES has designed several 3-ply masks that alert the public to the fact that you have AE and are at high risk of COVID-19 infection. In order to add a level of additional protection, we have designed a hat and 2 sided t-shirts with the ‘high risk’ graphic on the front and message ‘If you can read this, you are too close”.  Any family member or loved one can wear these to signal ‘high risk’ to COVID-19 infection. The goal is that we assist in keeping you and your family safe. 


Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

You can now follow us on Instagram at intl_ae_society for educational and entertaining  visual information.

Children’s Corner





Homeschooling and Meeting IEP Goals during COVID-19





Many parents are telling their child’s teacher that they feel like failures because their child has lost ground since schools closed, and they don’t think they’re doing enough. In the next breath, they report about the ways they’ve been bonding with their child: “We did go hiking this weekend, and he really seemed to enjoy it.” Or they talk about the progress their child has made in nonacademic areas: “But the other day my daughter did say, ‘Mommy, I want pudding’ instead of crying.” Or “My child has regularly been feeding our dog.” It is important to realize how meaningful those little “wins” are. While students may inevitably lose some skills they were working toward at school, teachers are reinforcing for parents that this progress at home truly matters, too. Recognizing the value in these moments will make this time easier for you and for your child.

Most Popular Download

What Brain Survivors Want You To Know

memory loss_seat belt on_FB

IAES has just added a new handout to our library of Handouts and Fact Sheets in the ‘For Patient’ section on our website and it has become an instant hit!
What Brain Injury Survivors Want You To Know
This handout allows you to have a better understanding of what your loved one is experiencing, their challenges and what their needs are for improved success in their daily lives. We hope this will bring you greater insight. 

We encourage you to visit our AE Handouts and Fact Sheets page for other helpful downloads. 


COVID-19’s impact on the AE Community

Childhood Interrupted ~ audio book


childhood interrupted-sanjay Gupta

About This Audible Original

This 45-minute audiobook is being offered for free this month at  Audible. 

In this evocative, personal piece, Dr. Sanjay Gupta reflects on his life as a parent during this unprecedented time. He shares his fears and questions about raising his three young daughters amid our current public health crisis—and gives listeners a candid glimpse into how he’s navigating the pandemic at home. The neurosurgeon and CNN chief medical correspondent helps parents think about this time from the perspective he knows best: the workings of the brain. Equal parts essay, advice, and reassurance, Gupta reminds us that despite the relentless challenges of growing up during a pandemic, the kids will be all right.

Research shows the most and least effective materials for face masks



In a study in the Journal of Hospital Infection, researchers assessed the ability of a variety of nontraditional mask materials to protect a person from infection after 30 seconds and after 20 minutes of exposure in a highly contaminated environment.

When the researchers compared wearing masks to wearing no protection during 20-minute and 30-second exposures to the virus, they found that infection risks were reduced by 24-94% or by 44-99% depending on the mask and exposure duration. Risk reduction decreased as exposure duration increased, they found.

This article lists masks from best to worse.

Surprisingly, vacuum cleaner filters, which can be inserted into filter pockets in cloth masks are highly effective. The vacuum filters reduced infection risk by 83% for a 30-second exposure and 58% for a 20-minute exposure. Of the other nontraditional materials evaluated by the researchers, tea towels, cotton-blend fabrics, and antimicrobial pillowcases were the next best for protection.

Scarves, which reduced infection risk by 44% after 30 seconds and 24% after 20 minutes, and similarly effective cotton t-shirts are only slightly better than wearing no mask at all, they found.

“We knew that masks work, but we wanted to know how well and compare different materials’ effects on health outcomes,” says Wilson, who specializes in quantitative microbial risk assessment.

Most Popular Visual~






It is the moment between inhale and exhale-Mari Wagner Davis-FB

Mari Wagner Davis, a volunteer with IAES and an AE Warrior herself, has developed a talent for writing since going into recovery from her anti-NMDAr AE. Her work has become the voice of our souls. This piece captured the hearts of our community. We hope you enjoy it. 

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Clinician’s Corner

Not Your Average Seizure: A Case of N-Methyl-D-Aspartate Receptor Encephalitis and Review of Literature

The diagnosis of NMDA receptor encephalitis can be challenging. Oftentimes, nonspecific, and predominant neuropsychiatric symptoms may lead to misdiagnosis of a psychiatric disorder. Neuropsychiatric sequelae are a potential problem due to delay in diagnosis as most patients are treated for infectious etiologies. The majority of patients initially present with psychiatric symptoms at disease onset. Nearly eighty percent of cases are seen in women, of which half the cases occurring in women above the age of 18 are associated with a malignancy, most notably ovarian teratoma. It is hypothesized that molecular mimicry may play a role in the development of this disease. Neural tissue in teratomas may share similar epitopes with the NR1 subunit of the NMDA receptor, leading to cross-reactivity of anti-tumor Abs.

Graus et al. propose the following criteria be met to diagnose autoimmune encephalitis: (i) subacute onset with rapid progression of less than three months of memory deficits, altered mental status, or psychiatric symptoms; (ii) at least one of the following: new focal central nervous system findings, new-onset seizures in the absence of a history of epilepsy, CSF pleocytosis, or MRI features of encephalitis; and (iii) exclusion of alternative diagnoses.

Radiology has not been shown to be helpful in making the diagnosis. However, decreased 18F-fluorodeoxyglucose (FDG) occipital lobe metabolism on positron emission tomography (PET) or brain computed tomography (CT) may be suggestive of limbic encephalitis. In some cases, EEG can also support the diagnosis. Delta brush is a pattern characterized by a background of delta waves with superimposed bursts of beta frequency waves. While this is a uniquely recognized EEG pattern, it is neither sensitive nor specific for NMDA receptor encephalitis.

A definitive diagnosis is made with the detection of IgG Abs in the GluN1 subunit of the NMDA receptor in the serum or CSF. CSF IgG Ab is both highly sensitive and highly specific, whereas false-positive and false-negative results may occur with only serum testing.

Autoimmune encephalitides have been shown to be highly responsive to immunomodulatory therapy and, if present, tumor-directed therapy. Early initiation of treatment has been shown to improve clinical outcomes. Commonly used treatment strategies include high-dose corticosteroids, IVIG, plasma exchange, rituximab, cyclophosphamide, and mycophenolate, among others. Bortezomib has been used in cases refractory to first- and second-line therapies with favorable results.

NMDA receptor encephalitis associated with a tumor generally has a favorable prognosis with tumor resection. Conversely, cases not associated with a tumor are more likely to have disease relapse. Early diagnosis and treatment also confer a favorable prognosis. In patients not responding to first-line therapy, early initiation of therapeutic plasma exchange has been shown to improve clinical outcomes.


woman in pain wearing mask covid

COVID-19 Clinician’s Corner

55% of coronavirus patients still have neurological problems three months later: study



Could the coronavirus lead to chronic illness?

While lung scarring, heart, and kidney damage may result from COVID-19, doctors and researchers are starting to clock the potential long-term impact of the virus on the brain also.

Younger COVID-19 patients who were otherwise healthy are suffering blood clots and strokes.

And many “long-haulers,” or COVID-19 patients who have continued showing symptoms for months after the initial infection passed, report neurological problems such as confusion and difficulty concentrating (or brain fog), as well as headaches, extreme fatigue, mood changes, insomnia and loss of taste and/or smell.

Now a study of 60 COVID-19 patients published in Lancet this week finds that 55% of them were still displaying such neurological symptoms during follow-up visits three months later. And when doctors compared brain scans of these 60 COVID patients with those of a control group who had not been infected, they found that the brains of the COVID patients showed structural changes that correlated with memory loss and smell loss.

And that’s not exclusive to adults. A U.K. study of 4 cases showed children developed neurological manifestations such as headaches, muscle weakness, confusion, and disorientation. While two of the kids recovered, the other two continued to show symptoms, including muscle weakness so severe that they needed a wheelchair. The University College of London warned about a potential brain damage “epidemic” caused by COVID-19 in the journal Brain last month.
While it’s too soon to say whether such post-COVID conditions will be chronic, there is worry about recovered patients being able to return to work and school. “Patients are going to be somewhat debilitated, so their ability to work, their contribution to the workforce, to the domestic product, is going to be reduced,” he said. “It will affect society on many levels if the rates [of infection and long-term illness] persist to be this great.”

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Antibody Prevalence in Epilepsy and Encephalopathy (APE2) Score


Divyanshu Dubey, M.B.B.S., is a consultant in the Department of Laboratory Medicine and Pathology at Mayo Clinic in Rochester Minnesota. He holds the academic rank as an Assistant Professor of Laboratory Medicine and Pathology and Neurology. In this presentation, he discusses how patients with encephalopathy and/or epilepsy of unknown etiology may have an autoimmune or paraneoplastic cause.

Shop on line amazon Smiles FB - THE HERD August 2020~ 1st edition

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.

baC - THE HERD August 2020~ 1st edition

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.

mission2 - THE HERD August 2020~ 1st edition

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.

seal2 - THE HERD August 2020~ 1st edition
International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 


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.

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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