Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
August 2022 1st Edition
In this Issue~
- *Announcements: Caregiver Monthly Zoom Support Group, #AETuesdayTries, LGI1 Research Survey, The ExTINGUISH Trial
- *Children’s Corner (for all ages): Story Book Library, Recurrent Optic Neuritis in Pediatric Anti-N-Methyl-D-Aspartate Receptor (Anti-NMDAR) Encephalitis: Case Report and Literature Review
- *ABI Rehabilitation: Card Recall, Mandala Coloring Challenge
- *Helpful Tips for the AE Warrior: Autoimmune Encephalitis and Related Disorders of the Nervous System, Book Recommendations: Unwillable
- *Most Popular Visuals: Autoimmune Encephalitis Infographic, Welcome To My World
- *Featured AE Article: World First Australian and New Zealand trial of cannabidiol transdermal gel for the most common hard-to-treat epilepsy type in adults
- *Caregiver Honorable Mention: Timothy Crossley, Private 2nd Class US Army
- *Podcast: Corticosteroids in LGI1 Antibody Encephalitis
- *Clinician’s Corner: Long-term evolution and prognostic factors of epilepsy in limbic encephalitis with LGI1
- *Open Access: Ovarian teratoma related anti-NMDAR encephalitis: A case series and review of the literature
- *AE Trivia Cards: The Single Most Important Educational/Rehabilitation Tool for AE
- *AE Warrior Store: Shop for Your AE Bling and Raise Awareness
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
Announcements ~
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place August 11th at 6 pm PST/9 pm EST. The IAES Caregiver Support Group takes place 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.
#AETuesdayTries
The next monthly #AETuesdayTries zoom meet-up will take place August 30th, 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 your 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.
LGI1 Research Survey
If you live in the United States, United Kingdom, Spain or Germany, please enroll!
A Pharma company wants to understand what the journey of an Anti-LGI1 Autoimmune Encephalitis patient is like and needs your help!
The research has two parts: an online survey and a one-hour telephone interview. It addresses both patients and/or carers and you will be financially reimbursed for your time.
This is a GOLDEN opportunity for you to assist a Pharma company interested in developing new treatments for LGI1 patients directly. It is vital that they understand our AE journey and struggle! YOUR input will drive future progress for yourself and patients who will receive this diagnosis in the future. You can be a catalyst for change!
The ExTINGUISH Trial
This is the first-ever Clinical Trial for a promising new drug, Inebilizumab, to treat anti-NMDA receptor encephalitis, and will be funded by the National Institutes of Health (NIH).
The trial will start recruitment in January 2022. International Autoimmune Encephalitis Society is honored to be supporting the ExTINGUISH trial along with Autoimmune Encephalitis Alliance and The anti-NMDA Receptor Encephalitis Foundation.
Main Inclusion Criteria (in part)
Enrollment is limited to 116 newly diagnosed patients with a confirmed diagnosis of anti-NMDAR Encephalitis who are 18 years or older. Patients must have received at least 3 days of methylprednisolone 1000 mg IV or equivalent corticosteroid within 30 days prior to randomization (Day 1). In addition, patients must have received EITHER of the following treatments within 30 days before randomization.
- IVIg, at a minimum dose of 2 g/kg
- Plasma exchange or plasmapheresis, with a minimum of 5 treatments. NOTE: These treatments may be provided during the screening period, but must be completed prior to randomization.
mRS of ≥3 at the screening visit, indicating at least moderate disability. Ability and willingness to attend study visits and complete the study.
Children’s Corner
Story Book Library
Story Box Library allows children to watch celebrated stories read aloud by well loved storytellers. Login today with your local library card number. Recommended for children 3-12 years.
Recurrent Optic Neuritis in Pediatric Anti-N-Methyl-D-Aspartate Receptor (Anti-NMDAR) Encephalitis: Case Report and Literature Review
A report a case of a 10-year-old girl who first presented with anti-NMDAR encephalitis and later developed four episodes of left optic neuritis. Blurring of vision, pain on eye movement, and headache were the striking features in all episodes of optic neuritis. Optic neuritis and anti-NMDAR encephalitis are reversible with intensive immunotherapy. Early and accurate diagnosis can lead to better management of this condition.
ABI Rehabilitation From AE
Card Recall
A great exercise to play with AE Trivia Cards! Select four playing cards in sequence (3 of clubs, 4 of clubs, 5 of clubs) and place in random order face up. After five seconds turn the cards face down.
Then turn the cards over in sequence (3, then 4, then 5).
As you improve increase the number of cards in the sequence, allowing one more second of view time for each card added, to a maximum of 7 cards.
Mandala Coloring Challenge
Art therapy addresses cognitive skills, attention, organization and fine motor skills and has been shown to decrease stress and improve mindfulness. Its a wonderful way to re-learn and re-train your brain from the brain injury caused by AE.
Helpful Tips for Patients & Families
Book Recommendations:
Autoimmune Encephalitis and Related Disorders of the Nervous System
Autoimmune encephalitis, diseases where the immune system attacks the brain, have become a fast-moving field of study in recent years. The authors, Drs Josep Dalmau (who collaborated with IAES on AE Trivia Playing Cards), and Francesc Graus, have played pivotal roles in the discovery of these diseases. Here, they provide a comprehensive clinical guide to the differential diagnosis of these disorders, illustrated with over 200 figures, 30 videos and numerous clinical vignettes, many from their own practice. Clinical descriptions are straightforward, emphasizing distinctive diagnostic clues for each disease. The strengths and weaknesses of diagnostic tests and clinical criteria are discussed extensively, as well as the best evidence supporting the use of available treatments. There is an up-to-date description of immunological triggers and comorbidities, and well-illustrated and clearly summarized pathogenic mechanisms and disease models.
Unwillable
Most Popular Visuals
Autoimmune Encephalitis Infographic
Welcome to My World
Featured AE Article
World First Australian and New Zealand trial of cannabidiol transdermal gel for the most common hard-to-treat epilepsy type in adults
Here’s to our friends at Monash University in Australia. They performed the World first Australian and New Zealand trial of cannabidiol transdermal gel for the most common hard-to-treat epilepsy type in adults.
Over the years, we have watched the research and clinical trials on this topic. Some of you here have retractable seizures that do not respond to any seizure meds, some of you have been prescribed this to positive success. It is not something you can try on your own! Only specific AE patients.
Caregiver Honorable Mention: Timothy Crossley, Private 2nd Class US Army
Timothy Crossley with his zebra ‘Kenny’
Tim Crossley_leading in pledge of allegence
Tim Crossley-boot camp
Caregivers work tirelessly to support their loved one with Autoimmune Encephalitis. To the “AE Warrior”, they are our “AE Sentinel”. With devotion, courage, compassion and unconditional love they keep watch. They stand their post with skills of a juggler, mind reader, jester, and keeper of knowledge. They diligently and quietly sacrifice their own needs and desires to see to their loved one’s needs over their own. Every caregiver in the AE community (AE Sentinel) has saved their loved one’s life at least once. They are our unsung heroes. It is with great pride that we introduce you to one such sentinel.
Tim’s mother, Amy Crossley, was diagnosed with anti-NMDAr encephalitis in 2015. Her husband Shawn and ten year old son Tim became her caregivers. In the morning before school Tim would make sure his mother had taken her medications, and would assess her needs before leaving the house. He came straight home from school to take care of his mother. He learned how to handle medical emergencies and seizure care and adapted strategies to support the wide array of neuropsychiatric symptoms and neurological symptoms his mother was plagued with. Amy went into recovery in 2020, but has been left with seizures and lasting deficits.
Pictured above is Tim at age 10 with ‘Kenny’, a zebra we sent him as a personal gift for his courage and dedication, High School leading the pledge of alligence, and this week for his graduation from boot camp at Fort Jackson, South Carolina.
Timothy is now 17. As we watched Private 2nd Class Timothy Crossley grow up, we saw the boy quickly become a man who shouldered responsibility unthinkable to his peers. The phrase, ‘and a child shall lead them.’ comes to our mind and heart when we reflect on the Crossley family story. Men like Timothy are as rare as Autoimmune Encephalitis. We talk about how AE can claim many victims as it impacts family and friends as well as the patient. They also have to dig deep within themselves to find inner strength just as the AE warrior must.
Today, Timothy is standing a new post, in support and defense of the Constitution of the United States against all enemies, foreign and domestic. He took this obligation freely, without any mental reservation or purpose of evasion as he did caring for his Mom. We know, because we know Timothy, that he will faithfully discharge his duties. Moving forward, Tim has pledged an oath to take care of us all, for that we are eternally grateful!
Podcast
Corticosteroids in LGI1 Antibody Encephalitis
Dr. Justin Abbatemarco, whom many of you know from his presentations during AE Awareness Month ’21 & ’22, talks with Prof. Sarosh Irani about the use of corticosteroids as a first-line agent in the treatment of LGI1 antibody encephalitis. This podcast discusses findings in the research titled: LGI1 Encephalitis acute treatment comparisons and outcome. Dr. Irani discovered LGI1 and leads the neurology group at Oxford in the U.K.
Clinician’s Corner
Long-term evolution and prognostic factors of epilepsy in limbic encephalitis with LGI1 antibodies
Results: 39 patients with LGI1 encephalitis were included with a median follow-up duration of 42 months (range 13-169). All of them reported seizures at the acute phase, with faciobrachial dystonic seizures (FBDS) in 23 (59%) and other focal seizures in 38 (97%), including 4 patients (10%) with de novo status epilepticus. At the last follow-up visit, 11 patients (28%) achieved epilepsy remission. Among the 28 patients with persistent epilepsy, eight (29%) fulfilled criteria of drug-resistant epilepsy (DRE). The only factor significantly associated with epilepsy remission was the time from clinical onset of the encephalitis to initiation of the first immunomodulatory treatment, with longer delay in patients with persistent epilepsy (7.5 ± 8.9 vs 2.4 ± 1.7 months, p = 0.006). Evolution to DRE was only driven by MRI evolution. Eight of the 15 patients (53%) who developed hippocampal atrophy (p = 0.007) also suffered from drug-resistant seizures at the last follow-up.
Significance: In patients with LGI1 encephalitis, rapid initiation of immunomodulatory treatment favors long-term epilepsy remission. Evolution to drug-resistant epilepsy (DRE). DRE might primarily reflect the anatomical lesion of limbic structures. Determining what modalities of immune treatment may alter these outcomes requires prospective studies with long-term follow-up.
Open Access
Ovarian teratoma related anti-N-methyl-D-aspartate receptor encephalitis: A case series and review of the literature
RESULTS
The six patients enrolled for this study presented with typical symptoms resulting in a diagnosis of ovarian teratoma induced anti-NMDAR encephalitis. Appropriate interventions led to a positive outcome in all the patients, with five of six patients reporting full recovery and the sixth patient recovering with a few deficits. No death was recorded. The literature survey comprising of 155 patients cases across 130 case reports of anti-NMDAR encephalitis clearly indicated an upward trend in the reports/diagnosis in China, particularly in the surveyed time from 2014 through 2019. The majority of patients (150/155) underwent surgical intervention resulting in positive outcome. No treatment intervention was mentioned for one case while the four patients who were not surgically operated succumbed to the disease.
AE Trivia Playing Cards
The perfect companion for patients, caregivers & therapists
Doctor Recommended
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
AE Warrior Store
Shop for Your AE Bling and Raise Awareness
IAES holds the trademark for #AEWarrior, AE Warrior and Autoimmune Encephalitis Warrior and is the creator of these phrases. Proceeds also go to support research that may one day lead to a cure.
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.
Shop & Support IAES Through PayPal’s
#GiveATCheckOut
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| 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. MakeMeSmile is an extension for Chrome that makes sure you select International Autoimmune Encephalitis Society when you shop online. It’s free to download. And you don’t even need to sign up. |
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.
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.
