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Selected Highlighted News in the field of Autoimmune

Encephalitis June 2020 2nd edition

• •  Announcements: How to prepare for your Telehealth appointment flyer,  Updated guidance on Mask wearing  for Public flyer, AE Trivia Playing Cards hailed by Clinicians,  PBS documentary seeks AE Warriors to interview 
    
  • Children’s Corner: AE Warrior Kid’s Survival Kit
    
  • Most Popular Visual of the Month: Autoimmune Encephaltits infographic
    
  • Most Popular APP: Speak4Me App
    
  • COVID-19’s Impact on the AE Community: IAES Board Member, Dr. Daria Muir completes John Hopkins COVID-19 Contact Tracing Course; This chart can help you weith coronavirus risks this summer; Widespread mask-wearing could prevent COVID-19 second waves
    
  • Clinician’s Corner: Immune-mediated pediatric encephalitis – the need for a comprehensive evaluation and consensus guidelines
    
  • Open Access: 18F-FDG-PET Imaging Patterns in Autoimmune Encephalitis: Impact of Image Analysis on the Results
    

National Organization of Rare Diseases (NORD) has developed a new flyer: HOW TO PREPARE FOR YOUR TELEHEALTH APPOINTMENT

Our excitement continues to build over the rave reviews we are receiving from experts in the field about our AE Trivia playing cards. Doctors have begun to provide decks to their patients and have been receiving smiles all around.

The support patients have been reporting is so exciting and gratifying to hear. This simple educational and rehabilitation tool appears destined to be the greatest personal support any AE patient, caregiver, therapist, teacher or medical professional can own.

Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  AE Trivia cards answer the most common questions about AE. 

PBS is interested in speaking to adults (18+) who were initially diagnosed with mental illness, perhaps even institutionalized, before their anti-NDMA autoimmune encephalitis was discovered. From PBS’ perspective, ideal candidates will have videos or audio recordings of their journey (personal phone recordings, hospital/ diagnostic videos or other documentation of their symptoms and/or treatment) so we can visualize your story. The process will involve some back and forth via email/ phone to get to know potential subjects and their stories over the next few weeks. We’d love to hear from you. 

Children’s Corner

Share your love and encouragement by purchasing a survival kit label.  Print your label and affix it to a colorful lunch bag.  (Goodies not included).  Collect required contents and use tissue paper or ribbon to create a festive presentation.

IAES has created 11 different variations of these kits that are bound to bring smiles of pleasure to those who receive them. Create a kit for your AE Warrior™,  AE Mom, Doctor, Psychiatrist, Nurse, Infusion day, Child, or Caregiver. 

Most Popular Visual

IAES is reputed to be the most reliable resource for easy to learn aids in understanding autoimmune encephalitis. Visit our AE Memes page for detailed answers to your most common questions and topics. You will find this infographic under the ‘General’ category. 

COVID-19’s impact on the AE Community

Dr. Daria Muir, who sits on our Board of Directors as Secretary and assists in crisis advocacy as a Medical Consultant for IAES in cases around the world, has now expanded her role by working with Johns Hopkins and completing the COVID-19 contact tracing course.

By answering the call for medical professionals to step up in a time of this global health crisis, Daria will be on the front lines of the pandemic to stop the spread. Her dedication to the health of others impacts and improves all our lives. Her work product in monitoring the research as it unfolds and how COVID impacts the AE community, Neurology, and Neuropsychiatric disease is available to you on the COVID-19 articles page of our website which also includes videos for ease of learning.

We are so fortunate to have a consummate professional such as Dr. Muir working for the best interests of AE patients and families and now advancing her role to meet the challenges COVID-19 demands of us.

This chart can help you weigh coronavirus risks this summer

This helpful article provides guidance in your decision making of risk to exposure to COVID-19 and alternative ways you can enjoy activities and remain safe and healthy.

Widespread mask-wearing could prevent COVID-19 second waves: study

At the onset of the pandemic, scientific evidence on the effectiveness of face masks in slowing transmission of respiratory diseases was limited, and there was no data on COVID-19 since it was a previously unknown disease.

Population-wide face mask use could push COVID-19 transmission down to controllable levels for national epidemics and could prevent further waves of the pandemic disease when combined with lockdowns, according to a British study.

“Our analyses support the immediate and universal adoption of face masks by the public,” said Richard Stutt, who co-led the study at Cambridge.” He said combining widespread mask use with social distancing and some lockdown measures, could be “an acceptable way of managing the pandemic and re-opening economic activity” before the development of an effective vaccine against COVID-19, the respiratory illness caused by the coronavirus.

Most Popular APP of the Month

Speak4Me APP

App recommendation for iPhone and IPad.
This is a free app that can support patients when our eyesight is blurry (common with AE) or when we are too brain fatigued to read. A handy app that can save us from overtaxing our brain and still accomplish our reading needs/desires/pleasures. The app speaks the text of your reading material clearly and the speed and tone can be adjusted, a wonderful solution to supporting deficits caused by AE. Simply import the reading material or copy and paste it directly.

Clinician’s Corner

Immune mediated pediatric encephalitis – need for comprehensive evaluation and consensus guidelines

There is a heterogeneous presentation of autoimmune encephalitis in pediatric populations. In the absence of positive findings on testing, individuals who do not meet proposed criteria for seronegative encephalitis may be misdiagnosed, and/or may not respond adequately to treatment. In those cases, comprehensive evaluation and stringent application of consensus guidelines are necessary. 

Much like the mechanisms that make placebo treatments work, we know that provider warmth and competence are positively associated with health at the biological level. Personal protective equipment (PPE) signals competence; portraits could be one of the only signals of warmth for patients who have, or may have, COVID-19. PPE Portraits are disposable portrait picture stickers (4×5 inches) put on PPE that can help patients and providers form a personal connection to positively impact patient health.

18F-FDG-PET Imaging Patterns in Autoimmune Encephalitis: Impact of Image Analysis on the Results

Conclusions: For the evaluation of patients with suspected AE, standard analysis of FDG-PET images benefits from voxel-based analysis, as it may lead to more comparable and accurate results. This study provides new evidence of the utility of FDG-PET for AE beyond the approach based on MRI, CSF sampling and EEG. Patients with AE may benefit from prompt diagnosis when brain FDG-PET is added to the traditional complementary tests.

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 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.