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theherd - THE HERD September 2020~ 1st edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis September 2020 1st edition

In this Issue~


    •  Announcements: Survey on the impact of COVID-19 & autoimmune diseases, AE Warrior Store, AE Trivia Playing Cards
    • Children’s Corner: Back to School Sleep Tips During COVID, Summer Fun – Family Fun – Year-Round Fun!
    • Most Popular Visual of the Month: AE Treatments, Dose, Frequency, Side effects & Lab monitoring
    • COVID-19’s Impact on the AE Community: Covid-19 a lesson from Immunosuppressed patients,  Steroids Can Be Lifesaving for Covid-19 Patients, Scientists Report 
    • Most Popular Download: The First Aid Tool Kit
    • Clinician’s Corner: Hashimoto encephalopathy in the 21st century
    • COVID-19 Clinician’s Corner: Neurologic complications of COVID-19, Obesity Boosts Risk in COVID-19 from diagnosis to death
    • Open Access: Cognitive impact of neuronal antibodies: encephalitis and beyond


Survey: Emotional, Social, and Physical Impact of COVID-19 on the Autoimmune Disease Community

Thank you for participating in my study about the emotional, social, and physical impact of COVID-19 on the Autoimmune Disease community and how patients attempt to cope with their disease. My name is Scott Weitman and I am a 17-year-old high school student living with an autoimmune disease called alopecia areata. Alopecia areata causes me to lose my hair and I was devastated by being a student with no hair.

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.

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





Back to School Sleep Tips During COVID





Whether you’re back-to-school online or in a classroom, just say no to falling asleep during school. The first weeks and months of school can be a huge struggle between parents and kids at bedtime. This guide explains why and teaches parents what they can do about it.

Every year it’s difficult for kids to get back into the routine of bedtime on school nights. With this year’s added challenges, it’s no wonder that children and their parents are finding it harder than ever to get back to a regular bedtime this school year. To help support healthy sleep for students and parents during the pandemic This resource provides easy steps parents can take to get their child back into a routine to wake up early for school. We include tips like making time and space to talk through anxiety that keeps kids up at night, as well as how to create a healthy sleep environment in their bedrooms.


Summer Fun – Family Fun – Year-Round Fun!

Being outside and getting exercise is helpful to those of us with Autoimmune Encephalitis. Walking and cardio exercise helps with brain injury. You/your AE Warrior may qualify for a National Park passport for the disabled.  This article tells you how to apply.

For additional resources, visit Patient and Caregiver Support. 

Most Popular Download

The First Aid Tool Kit

first aid tool kit

This IAES pro-active preparedness resource guide for Autoimmune Encephalitis Patients and Caregivers is designed to assist you in managing your care. It addresses how to navigate the challenges and pitfalls encountered when diagnosed with an under-recognized disease that presents with psychiatric symptoms.

A ‘Must Have’ companion guide for ALL in the AE community. We hope it helps in times of crisis and in your daily life. 

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


COVID-19’s impact on the AE Community

COVID-19 a lesson from immunosuppressed patients


Chronic immunosuppression is associated with increased and more severe viral infections. However, little is known about the association between immunosuppression and severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) infection.

Ten patients from six different hospitals in Italy were diagnosed with COVID‐19 during the outbreak of SARS‐CoV‐2 in March 2020. All patients were taking immunosuppressive therapy.

Conclusion: Patients under immunosuppressive therapy for AIH developing COVID‐19 show a disease course presumptively similar to that reported in the non‐immunosuppressed population. These data might help the medical decision when dealing with SARS‐CoV‐2 infection in immunocompromised. 


Steroids Can Be Lifesaving for Covid-19 Patients, Scientists Report



After the release of the new data, the World Health Organization strongly recommended steroids for the treatment of patients with severe or critical Covid-19 worldwide. But the agency recommended against giving the drugs to patients with mild disease.

The new studies include an analysis that pooled data from seven randomized clinical trials evaluating three steroids in over 1,700 patients. The study concluded that each of the three drugs reduced the risk of death.

Most Popular Visual~






AE Treatments, Dose, Frequency, Side Effects & Lab Monitoring



IAES_Treatment_side effects_dose
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Clinician’s Corner

Hashimoto encephalopathy in the 21st century

24 patients that met criteria for HE (subacute cognitive impairment, seizures, or psychiatric symptoms with markedly elevated TPO antibodies and negative neuronal antibody testing) were identified, and their treatment response and clinical features reviewed.

Of the 19 that received treatment, only 6 (31%) responded to a course of steroids. The authors were unable to identify any clinical feature that differentiated steroid responders from non-responders.

The study also found that TPO antibodies had similar prevalence (8%) among patients with suspected HE, autoimmune encephalitis, and other neuroimmunologic conditions.

This important paper highlights the difficulties in using TPO antibodies as a marker of CNS autoimmunity, particularly as the antibodies do not bind to neuronal tissue. It also highlights that current criteria do not differentiate steroid responders from non-responders.

It also leaves several questions: what are the mechanisms behind HE? What markers will help us identify the 30% of patients that need treatment, and spare the others the risks of high dose steroids?

Conclusion Current pretreatment criteria of HE do not predict steroid responsiveness. The detection of TPOAb across all control groups reveals their poor disease-specificity. NH2-α-enolaseAb did not help in the diagnosis of HE. These findings imply a redefinition of HE that requires a systematic exclusion of antibody-mediated encephalitis.


woman in pain wearing mask covid

COVID-19 Clinician’s Corner

Neurologic complications of COVID-19



Highly Recommended 

Common neurologic complications in patients with coronavirus disease 2019 (COVID-19), resulting from SARS-CoV-2 infection, are presented. Acute Encephalopathy, Acute cerebrovascular diseases, Acute ischemic stroke, Encephalitis, meningitis, Acute necrotizing hemorrhagic encephalopathy, Acute disseminated encephalomyelitis, Acute disseminated encephalomyelitis (ADEM),  SEIZURES, Critical illness polyneuropathy, and myopathy, Acute inflammatory demyelinating polyneuropathy, and Olfactory neuropathy.

Human coronaviruses, including SARS-CoV-2, have the ability for neurotropism. Commonly reported neurologic complications in patients infected with
SARS-CoV-2 include encephalopathy, neuromuscular disorders, and acute cerebrovascular disorders.
Other complications, such as postinfectious demyelination, encephalitis, and seizures are likely underreported given the inability to obtain further diagnostic information, such as CSF sampling and EEG
monitoring. Clinicians should have a high clinical suspicion for associated neurologic complications in a COVID-19–infected patient.

Obesity Boosts Risks in COVID-19 from Diagnosis to Death




 A new analysis of existing research confirms a stark link between excess weight and COVID-19: People with obesity are much more likely to be diagnosed with the novel coronavirus, undergo hospitalization and ICU admission, and die.

On the biological front, it appears that the immune system is much weaker if you’re obese, and excess weight may worsen the course of a respiratory disease such as COVID-19 because of lung disorders such as sleep apnea.

In addition to highlighting inflammation and a weakened immune system, the review offers multiple explanations for why patients with obesity face worse outcomes in COVID-19. It may be more difficult for medical professionals to care for them in the hospital because of their weight, the authors wrote, and “obesity may also impair therapeutic treatments during COVID-19 infections.” The authors noted that ACE inhibitors may worsen COVID-19 in patients with type 2 diabetes. 

The researchers noted that “potentially the vaccines developed to address COVID-19 will be less effective for individuals with obesity due to a weakened immune response.” They pointed to research that suggests  T-cell responses are weaker and antibody titers wane at a faster rate in people with obesity who are vaccinated against influenza. 


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Cognitive impact of neuronal antibodies: encepalitis and beyond


Cognitive dysfunction is a common feature of autoimmune encephalitis. Pathogenic neuronal surface antibodies (the most common type that cling to the outside of the healthy brain cell it is attacking) are thought to create a distinct profile of cognitive impairment in both the acute and chronic phases of that type of AE. In this review, researchers describe the cognitive impairment associated with each antibody-mediated syndrome.

Types of AE included are: anti-NMDAr, LGI1, CASPR2, AMPAR, GABA aR, GABA bR, 

The characteristic features that are seen at the beginning of the disease and at long term follow up are detailed in the article and included in Table 1 that allows you to review this with ease. 


Shop on line amazon Smiles FB - THE HERD September 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.

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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.

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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.

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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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