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AE Awareness Speakers 2022

AE  Awareness Month

Speakers Series

February 2024

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A Star-studded lineup of experts in Autoimmune Neurology joined us throughout the month.  This empowering series will help you gain a strong understanding of AE, assist you in having improved communication with your doctor, and help you become a stronger self- advocate.

Education is Power.

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Grace Gombolay, MD

Grace Gombolay, MD

Director, Pediatric Neuroimmunology and Multiple Sclerosis Clinic Emory University SOM/Children's Healthcare of Atlanta

Topic: Treatments for Pediatric & Adult AE (including Seronegative)

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This is the first of a 5-part Speaker Series celebrating Autoimmune Encephalitis Awareness Month 2024 hosted by IAES and sponsored by UCB. Dr. Gombolay begins her presentation with an overview of how Autoimmune Encephalitis is diagnosed, the many disorders that mimic the presentation, and the various antibody tests conducted. She takes us on a deep dive of the treatments. Reviews what each treatment does, the expected response time for treatments, and when treatments should be escalated. Supportive medications for symptoms are reviewed. These are used until the treatment for the patient’s AE has reached full effect and then are slowly peeled off. A question-and-answer session follows the presentation.

Grace Gombolay, MD,  a Pediatric Neurologist at Children’s Healthcare of Atlanta and an Assistant Professor at Emory University School of Medicine.  Dr. Gombolay strives to provide excellent clinical care to patients while studying the mechanisms in the immune system that result in disease and ways to modify disease.

Mellad Khoshnood, MD

Mellad Khoshnood, MD

Clinical Assistant Professor of Neurology (Clinician-Educator), Child Neurologist USC

Topic: Pediatric Autoimmune Encephalitis

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Dr. Khoshnood has expertise in Down syndrome, Neuro-immunology, Autoimmune Encephalitis, and Multiple Sclerosis.

This is an engaging presentation with helpful visuals throughout that allow both clinician and family member, or patient to follow along and take in information about a complex disease with ease.

Dr. Khoshnood reviews the prevalence of AE, neuropsychiatric symptoms, speech issues, seizures (60% of patients), movement disorders, and autonomic dysfunction that may be seen in the patient history and presentation with autoimmune encephalitis patients. Clinicians are advised to have a high suspicion of possible AE when specific findings are present as outlined in the requirements of possible autoimmune encephalitis in the 2016 Graus, Dalmau et al paper, a Clinical Approach to Diagnosis of Autoimmune Encephalitis. Dr. Khoshnood uses several case studies and their unique presentation to illustrate the need for a wide investigation to rule out the possibility of the culprit being AE.

Josep Dalmau, MD, PhD

Josep Dalmau, MD, PhD

Neuro-oncology and Neuroimmunology

Topic:  Seronegative (Antibody-negative) Autoimmune Encephalitis

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Josep Dalmau, MD, PhD IDIBAPS-Hospital Clinic, University of Barcelona, and Caixa Research Institute, Barcelona (Spain). Adjunct Professor of Neurology, University of Pennsylvania, Philadelphia, USA

Dr. Dalmau is a neurologist specializing in Neuro-oncology, paraneoplastic syndromes, and autoimmune encephalitis. He discovered the first type of Autoimmune Encephalitis, anti-NMDAr, which was documented in a 2007 case study. Thus, identifying a new disease. All of us owe our lives to Dr. Dalmau. Dr. Dalmau has discovered 11 autoimmune diseases, known as autoimmune encephalopathies.

Dr. Dalmau begins by describing the types of antibodies found in this group of diseases. Currently, there are 17 different types of identified AE. A case study of a patient who had a differential diagnosis of anti-NMDAr AE illustrates the importance of the patient’s clinical presentation not comporting with AE. Differential diagnoses and the process of arriving at a diagnosis, errors in past diagnoses, and antibody testing with an emphasis on tissue-based assays not being reliable, and the proposed steps to refine the diagnosis of AE are reviewed.

How to treat antibody-negative but probable AE. What is the future direction of we are taking to advance the understanding of this group of diseases? The presentation is followed by a 50-minute lively and detailed question-and-answer period.

Sergio Muñiz-Castrillo, MD, Ph.D.

Sergio Muñiz-Castrillo, MD, Ph.D.

Stanford University Scholar, Department of Psychiatry and Behavioral Sciences, Postdoctoral Scholar. Stanford Center for Sleep

Topic: Prognostic Indicators for Functional & Cognitive Outcomes

 Watch this Webinar 

Stanford University Scholar, Department of Psychiatry and Behavioral Sciences, Postdoctoral Scholar. Stanford Center for Sleep

Dr. Castrillo begins with an overview of the broad symptoms of autoimmune encephalitis that may become long-term deficits. The MRS and CASE scores are reviewed. The MRS, Modified Ranking Score, is not a good tool for measuring outcomes as it was developed for stroke patients. It showed that 1/3 of patients were able to return to the previous baseline. Improvement overall increases, but it is very slow. The one-year functional status score, (NEO Score) is reviewed later in the presentation.

The best outcomes are seen with patients who receive second-line treatment, receive treatment early (within 4 weeks of onset), and do not have an ICU admission. Rituxan is associated with fewer relapses. Relapses occur in 12-15% of patients. Relapses are not as bad as the initial episode, they can create more disability. Patients with second-line treatment have fewer relapses. Predictors of good outcomes are adolescents and teenagers with first-line treatments.

Predictors of poor outcomes are patients under 2 and older than 65, ICU admittance, no early immunotherapy, extreme delta brush seen on EEG, abnormal posterior rhythm, cerebellar atrophy, hippocampal atrophy cytokines, and other inflammatory mediators as molecular biomarkers. Using anti-NMDAr as a model, CSF titers correlate better with the prognosis than serum titers. Not only for the prognosis but also for the relapses. Patients with a better outcome showed lower antibody titers in CSF.  Patients with higher CSF titers at one year had poorer outcomes and an increased relapse rate. However, similarly, patients with a high CSF antibody titer at one year had good outcomes. Further research is required to identify a measurement marker.

Outcomes for LGI1 patients and the common cognitive deficits are reviewed.  Only 15% of patients who were employed returned to their premorbid role. Fatigue correlates with disability, cognition, depression, anxiety, and quality of life. 14% of LGI1 cases have relapses within the first two years. The relapse is not as bad as the initial episode and creates additional disability. Almost 80% of patients have some level of lasting cognitive deficits. Patients with a higher antibody titer in CSF are also seen to have a poorer outcome. Age, older than 65, and female patients had poorer outcomes. In conclusion, long-term (cognitive outcomes are still poorly investigated and require more research. Inappropriate disability scales (mRs score) underestimate cognitive deficits. Early treatment provides the best outcomes and fewer relapses. Still, a substantial percentage of patients do not achieve their premorbid status. Finally, the role of neuroimaging or antibodies as prognostic biomarkers is yet to be defined.

There is a helpful Question and Answer session after the presentation.

Hesham Abboud, MD

Hesham Abboud, MD

Director, Multiple Sclerosis and Neuroimmunology Program, UH Cleveland Medical Center Assoc Professor, CWRU School of Medicine

Topic: Paraneoplastic Autoimmune Encephalitis

 

Watch this Webinar

Hesham Abboud, MD, PhD is the Director of the Multiple Sclerosis and Neuroimmunology Program at University Hospitals and a staff neurologist at the Parkinson’s and Movement Disorders Center. He is an Assistant Professor of Neurology at Case Western Reserve University School of Medicine. 

This is an engaging presentation with helpful visuals throughout that allow both clinician and family member, or patient to follow along and absorb a complex topic with ease. If you are a patient with a diagnosis of autoimmune encephalitis, paraneoplastic or not, you will gain a greater understanding of the disease as Dr. Abboud has a distinct talent as an educator.

Dr. Abboud begins by defining Paraneoplastic AE, which is thought to impact 1 in 300 cancer patients. By reviewing how the clinician arrives at the diagnosis, he reviews several MRIs showing grey matter and white matter-focused examples explaining that inflammation in paraneoplastic cases is caused by T-cells, not the antibody. B cells in this situation do not cause harm. The difference between intracellular and extracellular antibodies is illustrated with clear slides. Specific treatments are utilized in these cases. Dr. Abboud explains why some common treatments in non-paraneoplastic cases are not required, such as Rituxan and plasma exchange. 3 cases, including video footage, are presented illustrating the wide spectrum of presentations and challenges treatment decisions clinicians are faced with to ensure the best possible outcomes.

We Won't Stop Dreaming

We Won't Stop Dreaming

Sponsored By UCB

 

The 8th Annual Awareness Video, We Won’t Stop Dreaming

We Won’t Stop Dreaming” is a touchingly emotional inside look into the challenges patients with AE face.

Fun Advocacy Activities You Can Get Involved with During AE Awareness Month 2024

Fun Advocacy Activities You Can Get Involved with During AE Awareness Month 2024

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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