Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
November 2nd 2023 Edition
In this Issue~
- *Children’s Corner (for all ages): Turkey by Numbers Coloring
- *ABI Rehabilitation: Roll a Thanksgiving Story Game
- *Helpful Tips for the AE Warrior: Personal Health Record Notebook
- *Most Popular Visuals: A Thanksgiving Turkey’s Musings to the AE Warrior, Caregiver Character Archetypes
- *Featured AE Article: Mum gives birth in a coma after she started speaking with an American accent
- *Podcast: Autoimmune Encephalitis Series: Advancing the Science
- *Clinician’s Corner: Understanding Clinical Trials for Autoimmune Encephalitis Webinar
- *Open Access: Long-term outcomes and health-related quality of life in patients with autoimmune encephalitis: An observational study
- *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers
- *AE Studies & Clinical Trial: What is a Clinical Trial Video, Cielo Clinical Trial to Compare Satralizumab with placebo in anti-NMDAr and LGI1 patients, The IGNITE Study, The ExTINGUISH Trial
- *AE Trivia Cards: The Single Most Important Educational/Rehabilitation Tool for AE
- *AE Warrior Store: Shop for AE Bling and Raise Awareness. Check out our new arrivals
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut
Turkey by Numbers Coloring
Here’s a fun activity for our younger AE Warriors who are working on improving their executive functions in rehabilitation from brain injury from their AE. Executive functions are particularly important because they’re critical to how a person functions in their daily life. This color by numbers will assist your AE Warrior to improve
- Working memory: forming and storing memories, and processing information
- Mental flexibility: planning, multitasking, and problem-solving
- Self-control: controlling impulses and voluntary movement
This art project along with others is located on the ‘Children’s Corner’ webpage under the ‘For Patients’ tab on the IAES website.
ABI Rehabilitation From AE
Roll a Thanksgiving Story Game
Here’s a game to get you in the holiday spirit of gratitude and thanks. This game works on cognitive rehabilitation from brain injury due to AE. Roll the dice 4 times. Every time you roll, a different element of your story is revealed. Once you have finished rolling the dice, write or tell your story. Work on your: organizational skills, memory, cognitive, reasoning, and decision-making skills.
Helpful Tips for Patients & Families
Personal Health Record Notebook
Creating Your Personal Health Record (PHR) Notebook is vital for each patient. This handout details what information and records you should keep on hand to stay on top of doctor’s visits, medications, and insurance claims. Providing your own medical records may help you receive safer and quicker treatment if you change doctors, move, or end up in an emergency room. This is a “1-stop shop” notebook containing everything that family, doctors, therapists, and care team would need to know about your care. This handout is located on the IAES under the ‘For Patients’ tab>handouts and Fact sheets.
Most Popular Visuals
A Thanksgiving Turkey’s Musings to the AE Warrior
Autoimmune Encephalitis Halloween
Featured AE Article
Mum gives birth in coma after she started speaking with American accent
A seemingly healthy mother who suddenly started speaking with an American accent was forced to give birth while in a coma, weeks after she was diagnosed with a rare condition dubbed “brain on fire”. It completely changed her personality and meant she was unconscious for the first month of her baby daughter’s life.
Autoimmune Encephalitis Series: Advancing the Science
In the first episode of a four-part series on autoimmune encephalitis, Dr. Justin Abbatemarco, a member of IAES’ Medical Advisory Board, talks with Dr. Josep Dalmau about relevant updates on autoimmune encephalitis, ongoing/upcoming clinical trials, and so much more.
Understanding Clinical Trials for Autoimmune Encephalitis
IAES will be hosting a webinar on Clinical Trials that is free and open to the public on November 16th. We went to the best AE expert on the topic, Dr. Jeffrey Gelfand, who enthusiastically accepted our invitation.
Everyone here has a stake in this. If we are to find a cure for AE as an end goal, we MUST have better treatments that are FDA-approved for Autoimmune Encephalitis (approved treatments worldwide) so patients are never denied treatment or experience treatment delays. A great deal of advocacy and understanding of AE had to take place to reach this point. This is HUGE! There are alternative treatments other than Rituxan that can help patients who don’t respond as we hope or can be more effective. There are also 3rd line treatments with extreme promise, but we need to run Clinical Trials to get them to all AE patients for better outcomes.
All of us need to understand how clinical trials are run and share that information with any AE patient we meet. Dr. Gelfand focuses on clinical trials for AE, has been a key researcher on the topic, and has moved the ball forward for all AE patients through his contributions.
Clinical trials provide free AE treatment, experts oversee your case and the health and best outcome of the patient is not compromised if you get a placebo. AE patients get the opportunity to receive a highly promising treatment and our forever thanks for helping all patients (present and future), have better outcomes.
The webinar will be recorded.
Long-term outcomes and health-related quality of life in patients with autoimmune encephalitis: An observational study
As shown in Figure 2, 15 (71%) patients had global QOL within normal limits. Similarly, most of the patients had physical/mental QOL scores within normal limits (86% and 71%, respectively). By contrast, only 11 (52%) patients had social QOL within normal limits, and those of the other 10 (48%) were under normal limits. Based on the social QOL of each patient, they were divided into the “within-normal” group (n = 11) and “under-normal” group (n = 10), and a comparative analysis of the clinical manifestation revealed a higher frequency of sequelae in the “under-normal” group than in the “within-normal” group (90% vs 0%, P < .001) (Table 1). Moreover, the frequency of returning to work/school life was significantly lower in the “under-normal” group than in the “within-normal group” (40% vs 100%, P = .004), and mRS at the present was significantly worse in the “under-normal” group than in the “within-normal group” (1 vs 0, P = .004). No significant between-group differences were found in any other items (Table 1). The Neuro-QOL results in each of the 12 domains are shown in Supplementary Figure 4; Supplemental Digital Content 7, https://links.lww.com/MD/K21, and around 30% to 50% of the patients had HRQOL under normal limits in domains of depression, anxiety, affection, cognition, and social role.
Five years after AE onset, all patients achieved neurologically favorable outcomes (mRS ≤ 2), but nearly half of them had any type of sequelae. No more than 71% returned to their previous work or school life, and nearly half of the patients had social QOL under normal limits. The difficulty in returning to work/school and a worse HRQOL were prominent in patients with sequelae. Therefore, early diagnosis and treatment to prevent sequelae in the acute phase of AE could potentially promote patients’ return to previous work/school life and improve their long-term HRQOL several years after onset.
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on December 14th at 6 pm PST/9 pm EST. The IAES Caregiver Support Group takes place on the 2nd Thursday of each month. This is a ‘safe space’ where caregivers can build relationships/friendships with others who are “walking that walk”, share/vent, and receive the support and direction they so richly deserve.
AE Caregivers have a variety of unique challenges that are different from the AE Warrior’s. Often they feel alone and need to be able to share their concerns with others who are on that same journey. Sometimes hearing a chorus of ‘Me Too!’ can have great healing power of its own. Additionally, some of you may qualify for services you are unaware of that could assist or solve a challenge you (or your loved one) are having. As topics are discussed, your hostess, Mari Davis, will direct you to available solutions, services and supports.
Your Hostess, IAES Support Services Coordinator Mari Wagner Davis, has 30 years of experience as an accredited Nurse Case Manager. Mari’s professional career prior to becoming ill with Autoimmune Encephalitis was to locate and arrange for the support services needed for patients when released from the hospital to rehabilitation or home.
The next monthly #AETuesdayTries Zoom meet-up will take place on November 28th, and will always be the last Tuesday of each month.
“Tuesday Tries” addresses the emotional support and rehabilitation AE patients and caregivers require in recovering from autoimmune encephalitis by building resilience. The program utilizes science-based exercises from the work of PERMA; Seligman, 2012.
IAES wants to foster your capacity in the belief that better days are ahead! “Tuesday Tries” is about practicing a strengths-based approach by “normalizing the try;” celebrating critical milestones in the recovery and care of AE patients and caregivers in order to build a more resilient network of care.
A workbook organizer, “Growing Your Resilience” has been created to accompany the #AETuesdayTries program and is located on the ‘Apps and Tools for AE Warriors’ page in the section: ‘Building Your Resilience’ on the IAES website under the ‘For Patients’ tab. A link to download the organizer is also provided within your e-mail confirmation when you register.
Join AE patients and caregivers of all ages and stages in their AE journey. Receive insights and encouragement from others and celebrate your critical milestones in recovery and care while building a more resilient personal AE 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. 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 Studies and Clinical Trials
What Is A Clinical Trial (5-Minutes)
Cielo Clinical Trial to Compare Satralizumab with placebo in anti-NMDAr and LGI1 patients
The trial aims to show Satralizumab is safe and effective for the treatment of Autoimmune Encephalitis and become FDA-approved. Your participation will improve the lives of all future patients. Help us reach the best outcomes for all. Ask your doctor about this trial.
The ExTINGUISH Trial
The IGNITE Study
Your participation will help uncover that answer and your act of advocacy will eventually enhance lives! The first step to take is to fill out and submit the screening survey below.
Seronegative/antibody-negative patients can play an active advocacy role by distributing the IGNITE study flyer to their diagnosing doctor, and asking that it be posted at the infusion center you use, as well as hospitals and clinics you visit.
Sharing the flyer on your social media platforms will assist us in getting the highest level of participation possible.
AE Trivia Playing Cards
The perfect companion for patients, caregivers & therapists
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
AE Warrior Store
Shop for AE Bling and Raise Awareness
Shop & Support IAES Through PayPal’s
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.