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Selected Highlighted News in the field of Autoimmune Encephalitis~ October-2020 1st edition 

In this Issue~

IAES was honored at The George H.W. Bush Points of Light Awards in recognition of our development of Autoimmune Encephalitis Trivia Cards and COVID-19 response supporting the AE community and beyond.

The George H.W. Bush Points of Light Awards honors organizations who demonstrate the traits of our 41st president – integrity, empathy, respect, optimism, a conviction in the face of opposition, and belief in the power of the human spirit. 

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. 

Your child’s IEP or 504 Plan was not designed for distance learning. But here we are. And now it falls on parents and educators to make new accommodations for students with AE and other learning challenges when they’re outside the classroom. Here are common challenges in 2020, and advice from a learning expert.

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

Parents all over the world are asking the question, Should I send my child back to school in person?  A group of physician specialists collectively addressed these concerns and questions. As a team, they evaluated the various health conditions and medications that potentially impair the immune system and may place a child at higher risk for complications from COVID-19. We hope you find this guide helpful. 

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

Gastrointestinal symptoms are common in children infected with SARS-CoV-2 and should trigger tests for the virus. Tom Waterfield, the lead author of the antibodies study, told The BMJ, “Based on our findings I think that gastrointestinal symptoms should be added to the current list—high temperature, cough, and loss or change in sense of smell or taste—that trigger testing for coronavirus.” He added, “Diarrhea and vomiting in children should trigger a test.”

IAES offers a variety of coloring pages and word search puzzles on the Cognitive Exercises page under the 'For Patients' tab on our website.  Therapists, AE patients, caregivers, and family members frequently write to us to let us know how much these offerings have helped them during rehabilitation from acquired brain injury. This zebra wins the honor of 'most downloads' in the last two weeks. 

Visit the many choices there for you to enjoy. Adult coloring is also beneficial for stress management. 

Enjoy this comic that accommodates a 12-minute podcast outlining what you can do to prepare for the Winter ahead living with COVID-19. Be proactive now knowing that social distancing options will be impacted due to colder weather.

How long is coronavirus detected in children, and are children with coronavirus disease 2019 (COVID-19) identifiable by symptoms? 

Symptom screening fails to identify most COVID-19 cases in children, and SARS-CoV-2 RNA in children is detected for an unexpectedly long time. Children can be contagious an average of 17.6 days overall and 14.1 days in asymptomatic cases. Inapparent infections in children have been associated with silent COVID-19 transmission in the community

IAES created this video in 2017 to raise awareness of AE, the symptoms that happen when the disease first appears, how it is diagnosed and treated.
This 3 1/2 minute video is ideal to share with friends and family.

No criteria exist to establish when a neurological syndrome is pathogenically linked to GAD antibodies, often leading to the assumption that any syndrome in which these antibodies are present is immune mediated, sometimes resulting in misdiagnosis and unnecessary treatment. In this Review, we provide recommendations for assessing the association between a neurological syndrome and the presence of GAD antibodies, and we critically review the evidence on the pathogenicity of GAD antibodies. Given that stiff-person syndrome is usually autoimmune, the presence of GAD antibodies in the cerebrospinal fluid is sufficient to confirm a pathogenic link with GAD autoimmunity. However, for cerebellar ataxia, epilepsy and other syndromes with different aetiologies, we propose that confirmation of a pathogenic link with GAD autoimmunity requires demonstration of intrathecal GAD antibody synthesis. Nevertheless, the evidence that GAD antibodies are directly pathogenic is not yet convincing. Studies in animal models are needed to demonstrate whether neurological syndromes are directly caused by specific disruption of GAD function by GAD antibodies. In general, immunotherapy has limited effects on the outcomes of neurological syndromes associated with GAD antibodies.

Immune-mediated neurological sequelae following infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) are becoming increasingly evident, and can affect both the peripheral and central nervous system. We report a postinfectious brainstem syndrome in a patient with COVID-19 who presented with generalized myoclonus, ocular flutter with convergence spasm, and acquired hyperekplexia. Clinical improvement was seen following corticosteroids, highlighting this as a possible treatment in patients where a post-COVID-19 autoimmune encephalitis is suspected.

The study cohort included six patients, ranging in age from 2 to 18 years, who required anesthetic care during 21 procedures. Airway management included a laryngeal mask airway ( n = 8), endotracheal intubation ( n = 12), and native airway with spontaneous ventilation ( n = 1). Intravenous (IV) induction with propofol was used in 17 procedures for five patients, including three that required rapid sequence intubation using rocuronium or succinylcholine. Inhalation induction with sevoflurane in nitrous oxide (N2 O)/oxygen (O2 ) was chosen for two procedures in two patients. A combination of both induction techniques was used for two patients in two procedures. Maintenance anesthesia was accomplished with a volatile agent, predominantly sevoflurane, for 18 of the 21 procedures; propofol infusion for one procedure; and single dose of propofol was used for two short procedures. N2 O was not used for maintenance anesthesia in any of the encounters. None of the patients exhibited adverse events, including hemodynamic instability, thermoregulatory problems, or respiratory events perioperatively. Postoperatively, there was no observed deterioration in clinical status attributed to anesthetic care.

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.