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Selected Highlighted News in the field of Autoimmune
Encephalitis April 2020 2nd edition
In this Issue~
- Announcements: IAES to assist PBS with documentary, Autoimmune Encephalitis Trivia Cards On Sale, Secret Chocolate Chip Cookie Recipe Revealed
- Most Popular Visual of the Month: Shopping List for your COVID-19 Care Kit
- Most Popular Video of the Month: How do you help a grieving friend
- Most Popular Video for Children: Sesame Street: How to give yourself a self-hug by Abby Cadabby
- Clinician’s Corner: Remdesivir Prevents disease progression in Monkeys with COVID-19
- Open Access: Mystery case on anti-NMDAr Encephalitis conducted to educate medical professionals
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.
Autoimmune Encephalitis Trivia playing cards is the first product in the world designed to educate patients, therapists, caregivers, teachers, and friends about autoimmune encephalitis and act as an important patient rehabilitation tool all in one. AE experts around the world have shared their excitement about this product and how it can help patients.
Created by Tabitha Orth, IAES President and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE), AE Trivia cards answers the most common questions about AE.
Autoimmune Encephalitis Trivia cards are a vital educational/rehabilitation tool specifically designed to support AE patients, caregivers, loved ones, therapists and teachers. Each set includes 52 cards, 2 Jokers, an information card and an instruction booklet. Cards contain questions and answers to the most common questions patients ask about the disease covering diagnosis, symptoms, treatment, and recovery.
AE trivia cards double as a rehabilitation tool for cognitive and memory loss challenges from brain injury. Through the repetition of playing, the user receives an outstanding educational foundation about AE that empowers them. Color coding is used to support lower baselines and children’s games.
As re-learning/re-training the brain advances from color and number matching and memory games, other suggested games outlined in the accompanying booklet can be utilized. AE trivia addresses brain functions such as long- and short-term memory, attention level, reading, reasoning skills, and cognition.
Family members, caregivers, and loved ones also benefit by learning about AE through the questions and answers provided on the cards. Therapists and Teachers can incorporate the cards in their rehabilitation programs or student educational goals.
AE Trivia cards are on sale to the public at the introductory low price of $15 per deck.
You can now follow us on Instagram at intl_ae_society for educational and entertaining visual information.
At the beginning of May, we challenged you all to take IAES’ #CoronavirusCommunityChallenge
Simple Acts of Kindness are occurring worldwide. DoubleTree by Hilton has stepped up. It may have taken a pandemic, but they have released their cherished chocolate chip recipe for all of us to enjoy while we #StayHome.
Involve your children by incorporating this activity into your homeschooling day as you teach fractions and measuring skills. (At least that’s the handy excuse we are giving you).
Most Popular Visual of the Month
Here at IAES, we work hard to provide the best resources for our patrons in all areas of their journey. With the COVID-19 pandemic as an additional challenge, we created a new website section on the 1st of March to address the unique challenges we find ourselves in. Easy to follow visuals have been created just to meet your needs for receiving accurate, up-to-date information in a user-friendly way during this fast news breaking time.
Each page addresses your specific needs: What you need to know for prevention if you become ill and keeping your family safe is addressed on our COVID-19 page. Resources, activities and inspirational and mental health support are located on our #StrongerTogether page and articles of specific interest for the AE community are located on our COVID-19 articles page. These pages are updated daily so we hope you will continue to visit us there often.
We appreciate the outpouring of positive responses we have received from all of you about how helpful you have found this information to be! #StayHome and #StaySafe we are #StrongerTogether !
How to Help a Grieving Friend
This video can be helpful for parents, spouses, and friends of #AEWarriors®. We grieve the losses of what we used to be able to do, our daily struggles to overcome, how difficult it is to do just about anything and the losses of school, school friends and our previous selves. The video explains how acknowledging these losses can be more helpful than trying to cheer someone up.
Most Popular Video of the Month
Sesame Street: How to Self Hug with Abby Cadabby
Whether you’re having big feelings, little feelings, or anything in between, you can just give yourself a hug! Learn how you can self-hug with Abby Cadabby.
Remdesivir Prevents Disease Progression in Monkeys with COVID-19
Here is some positive news!
Early treatment with the experimental antiviral drug remdesivir significantly reduced clinical disease and damage to the lungs of rhesus macaques infected with SARS-CoV-2, the coronavirus that causes COVID-19, according to National Institutes of Health scientists.
Twelve hours after the initial treatment, the scientists examined all animals and found the six treated animals in significantly better health than the untreated group, a trend that continued during the seven-day study.
The investigators note that the data supports initiating remdesivir treatment in COVID-19 patients as early as possible to achieve maximum treatment effect. “This finding is of great significance for patient management, where a clinical improvement should not be interpreted as a lack of infectiousness,” they write.
Mystery Case: Anti-NMDAr encephaltis with overlapping demyelinating syndrome
How are we doing in our efforts to raise awareness of Autoimmune Encephalitis in the medical community?
Dr Lopez, who is on our Medical Advisory Board, and colleagues at Mayo Clinic in Florida conducted a mystery case.
This case of a 31-year-old woman was used as a mystery case for Resident & Fellows to develop the clinical reasoning skills of trainees. Residency programs, medical student preceptors, and individuals were invited to use this Mystery Case as an educational tool. and brings us a great deal of hope!
The majority of the 580 respondents (66%) had just been in practice for 1–4 years. When asked for the 2 most likely differential diagnoses, 58.3% correctly chose autoimmune encephalitis, and 37.6% correctly recognized demyelinating lesions. the participants were asked for the 3 most important next tests. The autoimmune encephalitis panel was correctly chosen by 70.7%. Because of the suspicion of demyelination, the other correct answers included whole-spine MRI with contrast (28.1%) and AQP4 and MOG antibodies (37.1%)
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.
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.