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Selected Highlighted News in the field of Autoimmune Encephalitis~ October-2020 2nd edition 

In this Issue~

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'.

Help us shine a light on how much we appreciate our caregivers for the dedication and sacrifice they selflessly give 24/7. 

Caregivers, we would like to hear from you too. What is your daily life like? What worries and concerns you? What would you like to share with the public about finding your life upended by AE that you found yourself thrust into a caregiver role? What you have to say is an important window into the daily lives of the families we serve and a vital part of raising awareness of AE and the needs of all members of the family. If you would like your submission to be anonymous, just let us know. 

E-mail your submission to Barbara Layt Vujaklija at barbara.vujaklija@autoimmune-encephalitis.org with the 'Caregiver Tribute' in the regarding line. We will do the editing and put them together.

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.

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. 

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. 

Here's a fun way to engage your AE Warriors with cognitive exercises for improving their memory, executive
functioning, reasoning, and attention, among others.

Get in the Spirit with these 5 Halloween themed worksheets designed with children in mind (adults can still benefit from using them as well).

For more information and exercises for AE Warriors of all ages visit IAES' website by clicking the tab below. 

2020 has been a time for patience and adjustments to everyone around the globe due to COVID-19. Many of our AE families are managing work and homeschooling simultaneously. To assist you through these challenges we have put together a variety of resources you can easily access on our website. 

Here is an oceanography guide for kids with fun activities and facts about marine life that is sure to be a favorite with elementary school AE Warriors. 

You'll find this resource and many other helpful resources on IAES'  #StrongerTogether website page. 

The IAES "First Aid Tool Kit"
This 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.

Below is a direct link to other AE Fact Sheets and Handouts. 

This study highlights the high frequency and range of neurologic manifestations, which occurred in more than four-fifths of Covid‐19 patients hospitalized in our hospital network system. These results expand findings of neurologic manifestations in 36.4% of hospitalized Covid‐19 patients in China and 57.4% in Europe, albeit with increased prevalence in our US cohort. 

The fact that any neurologic manifestations as a whole were more likely to occur in younger people is surprising, and could potentially be explained by greater clinical emphasis on the risk of respiratory failure than other symptoms in older patients. Alternatively, early neurologic manifestations such as myalgia, headache, or dizziness may have prompted earlier medical care. In contrast, encephalopathy was more frequent in older patients. Risk factors for encephalopathy also included severe Covid‐19 disease and a history of any neurological disorder or chronic kidney disease. This is consistent with recent literature identifying higher rates of mortality in Covid‐19 patients with pre‐existing chronic neurological disorders.

The increased morbidity and mortality associated with encephalopathy, independent of respiratory severity, parallels previous literature in sepsis‐associated encephalopathy and delirium‐associated mortality, and emphasizes its relevance in Covid‐19. We also found that encephalopathy in Covid‐19 was associated with triple the hospital length of stay. Broad recognition and screening for encephalopathy as a contributor to disease severity in Covid‐19 may have utility in resource allocation and the potential to improve patient outcomes.

This case raises the possibility that this may be a novel form of autoimmune encephalitis induced by infection with SARS-CoV-2.

Acute malignant catatonia with autonomic instability developed in a previously healthy man. CT and MRI were normal, EEG showed slowing and cerebrospinal fluid showed a subtle indication of inflammation. 18F-FDG-PET conveyed high bilateral uptake in the striatum. Antibody testing revealed antibodies attacking healthy brain cells in the hippocampus, thalamus, striatum, and cortex. Early treatment with plasmapheresis and corticosteroid reversed disease progression and may have prevented large-scale neurological damage.

(Note: This article is a preprint and has not been peer-reviewed [what does this mean?]. It reports new medical research that has yet to be evaluated and so should not be used to guide clinical practice.)

In this Psychiatric Times Mental Health Minute, Dr. Deng and Dr. Yeshokumar, faculty from the Mount Sinai Health System department of neurology, discuss autoimmune encephalitis, an emerging neuropsychiatric disorder. Their goal is to raise awareness of this unusual but very important illness for which mental health providers play a crucial role in diagnosis and care.

In addition to touching on different clinical features that might lead mental health providers to consider the diagnosis, they also discuss long term management strategies, including recognition of broad psychosocial ramifications as well as individual cognitive and psychiatric sequelae.

Some neurologists specializing in autoimmune neurology have told IAES that they believe this treatment might be an option for some AE patients.

Another treatment for certain patients with the rare autoimmune disease neuromyelitis optica spectrum disorder (NMOSD) has received FDA approval. 

Satralizumab-mwge, marketed as Enspryng, was approved for adults with NMOSD who have antibodies against the aquaporin 4 (AQP4) protein. Binding of the antibodies with AQP4 activates the immune system and results in elevated, inflammation-promoting levels of interleukin 6 in cerebrospinal fluid. Satralizumab-mwge blocks interleukin 6 signaling pathways.

According to the manufacturer, Roche, satralizumab-mwge is the first subcutaneous treatment for adults with NMOSD who have antibodies against AQP4 that can be self-administered or given with a caregiver’s help. The wholesale price is $190 000 annually, according to a Roche spokesperson.

Serious adverse events include an increased risk of infection or potential reactivation of hepatitis B or tuberculosis, elevated liver enzymes, and decreased neutrophil counts. Common adverse events include nasopharyngitis, headache, and upper respiratory tract infection.

Highlights~

Anti Glutamic Acid Decarboxylase (GAD) antibodies have emerged as a cause of Limbic Encephalitis (LE).

Limbic encephalitis associated to anti-GAD antibodies has atypical clinical presentation with psychiatric features.

Median diagnostic delay appears delayed.

Patients with an association of neurological and psychiatric symptoms should be screened for anti-GAD antibodies.

Patients with anti-GAD LE can benefit from immunomodulatory treatment.

This brief narrative review summarized the mechanisms of CNS affection during SARS-CoV2 infection, which include different pathways and pathogenic cascades, concluding in chronic neuroinflammatory or neurodegenerative processes that typically underlie both common (PD and MS) or rare (narcolepsy) neurological diseases. In addition to direct neuronal injury, we also highlighted how SARS-CoV2 might have a role in the successive development of these chronic neurological disorders because of the activation of the systemic inflammatory response, favouring a culprit unbalance in the immune system or affecting other critical players of neurodegeneration and neuroinflammation, such as BBB integrity and gut-brain axis (Fig. 1).

Figure 1 - SARS-CoV2-induced mechanisms for neuropathogenicity. The scheme represents direct and indirect effects of COVID-19 that overlap with defined pathogenic mechanisms of common and rare chronic neurological disorders, suggesting its potential role as a risk factor.

Many of us go through rehabilitation as we are recovering from AE and/or after the disease is gone.  Often, we have to take a special driving test to be able to drive again. This article discusses driving after AE. Some helpful things I learned during my driving test were to leave more space between me and the car in front of me to allow for better reaction time. Also to wait once a light changed from red to green to make sure someone else wasn’t running through the light. I give myself plenty of time to get where I am going so I don’t feel rushed. I always make sure I know the directions. This study can help give caregivers and doctors an idea of when it is safe to drive and what things to look for to ensure safe driving.

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 find 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, the 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 generous Donations allow IAES to continue our important work and save lives! Due to the coronavirus pandemic, the need for our services has surged exponentially. Some cases of COVID-19 have affected the central nervous system and medical researchers are suspecting the infection could cause ADEM, type of Autoimmune Encephalitis. Donations of any size are vitally important to meet the increased need in our community. If you have the ability to set up a reoccurring monthly donation, it will be greatly appreciated and will immediately begin to help patients and families during this historic time.

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.