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Selected Highlighted News in the field of Autoimmune Encephalitis~ June 2021 1st Edition
In this Issue~
IAES launched its first “Tuesday Tries” on May 25th. AE patients and caregivers were so grateful to meet, share and validate each other’s experiences and share their personal stories.
The next monthly zoom meet-up will take place June 29th and will always take place the last Tuesday of each month. Join us to celebrate your critical milestones in recovery and care and help yourself build a more resilient network!
Your facilitator, 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. IAES would like to extend our congratulations to Tessa for having just been named President-elect of the Maryland Career Development Association.
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.
anti-NMDAr patient, Alessia Bellino, Publishes Book About her Journey
From The Lane to the Race
AE Warrior Store
New Arrivals ~ The AE Wingman Collection
New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection. Get some swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey.
Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey.
The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health.
Don’t forget to #GiveAtCheckOut if you purchase your gift through PayPal! (See: Shop and Support IAES Through PayPal’s #GiveAtCheckOut program below).
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.
Summer Camp Opportunities
25 Summer Camps for Individuals With Special Needs
When a family member develops Autoimmune Encephalitis it can change family roles. The outcome may be uncertain with recovery occurring over time. This may require family to adjust their roles as the person recovers. These issues are seldom addressed or discussed but are felt by all family members. This article discusses how disability effects families both if the disabled family member is a child or if the disability occurs when the individual is an adult. It may help families realize the role changes that occur and help provide some understanding.
ABI Rehabilitation From AE
Brain HQ – Brain Training that works
Hope, Faith, Bravery, Love ~ Coloring Page
Useful Tips for Patients & Families
The Web’s most current and comprehensive directory of Patient Assistance Programs
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need. All in one place.
Most Popular Download
Understanding Autoimmune Encephalitis
in the ICU
This is an easy-to-follow graphic that focuses on 5 types of AE and what is seen in the ICU.
COVID-19’s Impact on the AE Community
Preliminary Findings of mRNA Covid-19 Vaccine Safety in Pregnant Persons
Neurological complications in pediatric patients with SARS-CoV-2 infection: a systematic review of the literature
Featured AE Article~
Steroid‐induced osteoporosis: how can it be avoided?
If you are on steroids for your AE. Talk to you doctor about supplemental calcium, vitamin D and hormone replacement. Additionally, eat a diet rich in calcium and vitamin D.
Summary: Patients who will remain on glucocorticoids for more than a few weeks are clearly at risk for osteoporosis. Steroid‐induced bone loss should be prevented, and if present, should be treated. Exercise programs and the maintenance of a good nutritional status with an adequate calcium and phosphate intake and a restricted sodium intake are recommended. Supplementation with calcium and vitamin D should be given to all patients to restore normal calcium balance. Hormone replacement therapy should be considered in amenorrhoeic women. Patients with medium‐ to high‐dose steroid therapy should receive bisphosphonates or an activated form of vitamin D. Therapies should be continued as long as the patients are on steroids. To ensure that prevention of steroid‐induced osteoporosis is developing as the standard of care for patients receiving long‐term steroid treatment, a broad educational effort directed to physicians of various specialties is needed.
Table 1 provides dose recommendations for Calcium, Vitamin D and hormone replacement.
How Much GAD65 Do You Have? High Levels of GAD65 Antibodies in Autoimmune Encephalitis
10 Ways To Support A Person With Autoimmune Encephalitis
Bortezomib in anti-N-Methyl-d-Aspartate-Receptor (NMDA-R) encephalitis: A systematic review
• Proteasome inhibitor bortezomib could have a role in anti NMDA receptor encephalitis.
• Half of patients treated with bortezomib improved, but side effects were common.
• Larger and more homogeneous cohorts should be included in future trials.
N-methyl-d-aspartate receptor (NMDAR) encephalitis is a potentially treatable condition, although a small proportion of patients remains refractory to immunotherapy. Bortezomib is a proteasome inhibitor that has a promising role in autoimmune conditions. We performed an independent PubMed search employing “Anti-N-Methyl‑D-Aspartate encephalitis AND bortezomib”, including papers published between January 1st, 2007 to April 15th, 2021. Fourteen articles were included, with 29 patients. 16 patients (55.2%) had a favorable outcome after bortezomib and 11 (37.9%) patients developed side effects. Quality of studies was overall poor and future trials should aim to include more homogeneous and larger cohorts.
COVID-19 Clinician’s Corner
Pediatric anti-NMDA receptor encephalitis associated with COVID-19
Updated Diagnostic Criteria for Paraneoplastic Neurologic Syndromes
Objective The contemporary diagnosis of paraneoplastic neurologic syndromes (PNSs) requires an increasing understanding of their clinical, immunologic, and oncologic heterogeneity. The 2004 PNS criteria are partially outdated due to advances in PNS research in the last 16 years leading to the identification of new phenotypes and antibodies that have transformed the diagnostic approach to PNS. Here, we propose updated diagnostic criteria for PNS.
Results The panel proposed to substitute “classical syndromes” with the term “high-risk phenotypes” for cancer and introduce the concept of “intermediate-risk phenotypes.” The term “onconeural antibody” was replaced by “high risk” (>70% associated with cancer) and “intermediate risk” (30%–70% associated with cancer) antibodies. The panel classified 3 levels of evidence for PNS: definite, probable, and possible. Each level can be reached by using the PNS-Care Score, which combines clinical phenotype, antibody type, the presence or absence of cancer, and time of follow-up. With the exception of opsoclonus-myoclonus, the diagnosis of definite PNS requires the presence of high- or intermediate-risk antibodies. Specific recommendations for similar syndromes triggered by immune checkpoint inhibitors are also provided.
Conclusions The proposed criteria and recommendations should be used to enhance the clinical care of patients with PNS and to encourage standardization of research initiatives addressing PNS.
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.
Shop & Support IAES Through PayPal’s #GiveAtCheckOut
Get that great deal online and support IAES at the same time!
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.
This simple act of kindness, will support the work we do and advance our ability to service the community.
Smilematic, is a handy tool that will automatically redirect you to smile.amazon.com when you are shopping so you never have to worry about forgetting to type it in to ensure benefits go to IAES.
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.