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Selected Highlighted News in the field of Autoimmune Encephalitis~ May 2021 1st Edition
In this Issue~
IAES is launching “Tuesday Tries” on March 25th. This monthly zoom meet-up will take place the last Tuesday of each month and will celebrate your critical milestones in recovery and care and help you to build a more resilient network!
Your host, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab.
Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins’ and opportunities for relationship building.
AE Study Seek Your Participation
AE Patients Residing in Australia ~Your Participation is Needed
Dr. Mastura Monif, a member of the IAES Medical Advisory board who is located in Australia, is conducting a study on autoimmune encephalitis and seeks patient participation.
Leads The Australian Autoimmune Encephalitis Consortium Project that consists of up to 13 health and academic centers around the country bringing national experts together to tackle the issue of Autoimmune Encephalitis facing the Australian population.
The group has formed the Australian Autoimmune Encephalitis Consortium bringing together national experts from 4 states around the country to tackle the issue of AE facing the Australian Health sector. With this study, they hope to produce the largest cohort of retrospective and prospective cases of AE in Australia with the aim of gaining a better understanding of disease trajectory as well as identifying key clinical, electroencephalogram/seizure phenotype, cellular and biochemical, radiological & cognitive biomarkers of disease onset, progression & outcome. This study brings together a collaborative & multidisciplinary team of neurologists, neuroimmunologists, epilepsy experts, neuropsychologists, neuroradiologists, psychiatrists, and neuroscientists. The findings are hoped to generate extensive data regarding AE as well as the production of clinical guidelines for early identification, diagnosis & treatment of these devastating conditions.
EveryLife Foundation for Rare Diseases #RAREis Scholarship Fund $5,000 Educational Grant
Attention Rare Disease Community!
One-time awards of $5,000 each will be granted to up to 35 recipients for the Fall 2021 semester. Apply for this $5,000 Educational Grant today. Applications are open until May 7th.
Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens and hospitalizations, and exposure risks. While quality and duration of life continues to improve thanks to improved diagnosis and treatment approaches, individuals living with rare diseases still face disparities in achieving traditional life milestones.
That’s why the EveryLife Foundation for Rare Diseases established the #RAREis Scholarship Fund – to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted to up to 35 recipients for the Fall 2021 semester.
Anti-N-methyl-D-aspartate (anti-NMDA) receptor encephalitis is an immune-mediated syndrome that is still under-recognized, with grave consequences if not treated early. A multidisciplinary team approach is required in the process of diagnosis and management of this potentially treatable and reversible disorder.
This is a case study of a 26 month-old girl who was treated with intravenous (IV) corticosteroids, IV immune globulin, plasma exchange and rituximab. Her condition improved gradually, with full recovery when last seen 19 months after the onset of the disease.
Results: A total of 41 patients (age range: six to 34 months; median age: 23 months; female: 19) were enrolled in this study. Nineteen (46%) patients exhibited classical anti-NMDAR encephalitis, whereas 22 (54%) patients exhibited anti-NMDAR encephalitis after viral encephalitis. There was a high presentation of movement disorders (100%), developmental regression (90%), abnormal behaviors (90%). All patients were administered first-line therapy, with only 17% of them being administered second-line immunotherapy. Two patients succumbed to the disease, whereas none of them relapsed. At the long-term follow-up (more than one year), 20 of 35 (57%) exhibited satisfactory outcomes (modified Rankin Scale ≤2). Compared with patients with classical anti-NMDAR encephalitis (n = 18), patients after viral encephalitis (n = 17) were more likely to have worse clinical outcomes. They exhibited a higher modified Rankin Scale/Pediatric Cerebral Performance Category score and more frequent seizures. A predictor of poor outcome was presentation after viral encephalitis (odds ratio 35.7, 95% confidence interval 4.64 to 275.03, P = 0.001).
Conclusion: Anti-NMDAR encephalitis in infants and toddlers clinically presents with movement disorders, developmental regression, and abnormal behaviors. Interestingly, this group had a higher proportion of patients after viral encephalitis, which is regarded as the only risk factor for poor outcomes.
ABI Rehabilitation From AE
Visual Attention Worksheets
Word Search puzzles and puzzles of all types are a wonderful exercise to do for brain injury rehabilitation from AE. They are a great activity to help your AE warrior develop their problem-solving and analytical skills.
IAES has created several word search puzzles that feature hidden keywords that will encourage and aid in your learning and understanding of autoimmune encephalitis.
Challenge yourself with this puzzle and others that you will find as free downloads on our website. Then look through the puzzles in the AE Warrior Store that have been created with art by fellow AE patients. You are sure to become inspired and challenged in your recovery efforts.
Useful Tips for Patients & Families
31 Strategies for Living with Brain Injury
Reminder to all members~ we all need to wear a medical I.D. Bracelet.
This will prevent anyone from misunderstanding symptoms as psychiatric or behavioral problems.
There are a variety of Medical alert bands you can order, several inexpensive ones are found on the Apps & Tools website page.
Most Popular Download
Life with Autoimmune Encephalitis
Diagnostic Clues of anti-NMDAr AE
Have you been diagnosed with anti-NMDAr autoimmune encephalitis?
If so, visit our anti-NMDAr encephalitis website page for an easy to read overview and helpful images and charts that will assist you in understand this type of AE.
COVID-19’s Impact on the AE Community
As more people get vaccinated, what will getting vaccinated mean for immunocompromised people, and how does immunocompromised status potentially impact COVID-19 vaccine immunity?
People who are immunocompromised have weakened immune systems. According to the Centers for Disease Control and Prevention (CDC), this includes people who have diseases that affect their immune system.
“These COVID vaccines are not live vaccines,” Gulik says. “And so, a patient that is immunocompromised—no matter what degree of compromise—could take the vaccine.”
- Doctors recommend immunocompromised people receive the COVID-19 vaccine.
- The Pfizer and Moderna COVID-19 vaccines do not contain live traces of COVID-19.
- Depending on the person’s immunocompromised level, some may receive lower levels of immunity from the vaccine.
Featured AE Article~
Epilepsy Study Shows Link Between Brain Activity and Memory
|Many of us with autoimmune encephalitis have a seizure disorder. Seizures can have an impact on memory. We may not always realize that we are having a seizure, often subclinical seizures can be just a feeling of nausea or Deja vu. However, these seizures can impact our memory. It can be helpful to take note of these feelings, particularly start to have these feelings after treatment , and to report them to your doctor.|
Neurobehavioral Initiation and Motivation Problems After Acquired Brain Injury
Prospective Quantification of CSF Biomarkers in Antibody-Mediated Encephalitis
COVID-19 Clinician’s Corner
Rare Thrombosis Linked to J&J Vaccine: What to Look For, How to Manage It
Neural Autoantibodies in Cerebrospinal Fluid and Serum in Clinical High Risk for Psychosis, First-Episode Psychosis, and Healthy Volunteers
AE Trivia Playing Cards
The perfect companion for patients, Caregivers & Therapist
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
AE Warrior Store
New Arrivals~Mugs and Hats
New arrivals ~ The AE Warrior Store has two new collections you will not want to miss. Caregivers, Advocates and AE warriors will appreciate receiving a mug or hat that raises awareness for autoimmune encephalitis.
The proceeds of your purchase will immediately support autoimmune encephalitis patients, caregivers, and families who are walking this difficult journey. Proceeds also go to support research that may one day lead to a cure.
Ways to Shop & Support IAES
Have you wanted to support IAES, autoimmune encephalitis awareness, and the AE Warrior that you love?
Have you found our services helpful? Do you want to make sure patients are identified early and that they and their loved ones receive the best help possible during this difficult journey?
Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded that you can give $1 to IAES.
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.
International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency. IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344
Donations raised are greatly appreciated and directly support research, patients, caregivers, and families through their journey so the best outcomes can 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.