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AE  Awareness Month

Speakers Series Announced

In Celebration of Autoimmune Encephalitis Month, February 2022, we are pleased to be providing the AE community with a speaker series that will take place via live webinars throughout the month.

Presentations that will be recorded and featured on the IAES YouTube channel.

Catherine Jessop

Author

Topic: Pulling Through: Help for Families Navigating Life-Changing Illness 

View Recording

On Christmas Day 2016, the Jessops were just an ordinary family, but on Boxing Day, one near-death experience swept them all into the bewildering world of hospitals and serious illness, and their lives changed forever.

Pulling Through is a handbook of everything Catherine has learned on their autoimmune encephalitis journey. It covers many practicalities, such as explaining hospital tests and scans, jargon-busting medical terms, finance, rehabilitation and more. But it also illuminates the emotional aspect of illness and how massively it affects family and friends. There are chapters on the power of nature, music, counselling, optimism and humour, and how to look after the mental health of both patient and carer.

This is a book of hope, help and reassurance on every aspect of coping with life-changing illness in the family: the good, the bad, the funny, the sad, and the useful. If you, or someone you know, has a life-changing illness, then this presentation (and book) is here to help.

Ming Lim, MD, PhD

Consultant Paediatric Neurologist at the Evelina London Children’s Hospital

Topic: Early Treatment for Best Outcome in Pediatric Autoimmune Encephalitis

View Recording

Early treatment and best outcomes for autoimmune encephalitis in children is a topic that is widely ignored. Focus is usually centered on a specific type of AE. Dr. Lim will be presenting on published data and research that is currently in press on the topic.

“The overriding message is that we need to recognize this condition early and begin treatment right away. Treating it early and escalating as quickly as possible gives you a better outcome.”
Despite the grave condition of most patients, only half receive immunotherapy within 30 days of symptom onset. This lag, Dr. Lim says, is likely related to the delay in diagnosis.

Webinar will be recorded.

Justin Abbatemarco, MD

Neuroimmunology/Neurology Cleveland Clinic

Topic: Autoimmune Encephalitis-The Need For Comprehensive Care

View Webinar

Dr. Abbatemarco discusses why seeing an expert in AE is important and the best practice model of how the neurologist acts as a team leader for the other professionals that make up the multidisciplinary team for long-term care and rehabilitation. What supports should ideally be in place when the patient is discharged from the hospital. Understanding the roles of team members and how they assist the patient and caregiver in navigating their AE journey. Defining the ‘recovery’ phase, he outlines long-term outcomes giving patients and families a realistic view of what to expect.

Mastura Monif, M.D., PhD

Neurologist and Head of Neuroimmunology Service | Alfred Health Neurologist | Royal Melbourne Hospital, Australia

Topic: Autoimmune Encephalitis (with segment on Sero-negative AE) & Treatments

View Webinar

Dr. Mastura Monif gives an outstanding overview of Autoimmune Encephalitis and the treatments used in this group of diseases. With patients and caregiver in mind, she uses easy to follow language and helpful visuals a layperson can follow and outlines what occurs in the disease. Special attention is paid to patients who fall into the ‘sero-negative’ category as they currently make up the largest percentage of diagnosed patients. Treatments used in AE are outlined and explained along with other possible treatments that can be used when a patient does not respond as well as hoped, (refractory case). Dr. Monif also lists treatments doctors are considering as hopeful options in the future when more evidence is collected.

 

Professor Dr. Carsten Finke

Charité - Universitätsmedizin Berlin & Berlin School of Mind and Brain

Topic: Long-term cognitive outcome in anti-NMDA receptor encephalitis

View Webinar

Will report on his study which presents comprehensive longitudinal data for the cognitive outcome in NMDAR encephalitis. All patients had cognitive deficits about 2 years after disease onset, mainly affecting memory and executive function. After 4 years, moderate or severe cognitive deficits persisted in 2/3 of patients despite good functional neurological outcome. Impaired cognitive outcome was predicted by delayed treatment and higher disease severity. However, continued improvement of cognitive function was observed for several years after disease onset in some patients.

These deficits show a slow and incomplete recovery and persist beyond recovery of other neuropsychiatric symptoms of the disease.  Rapid diagnosis and treatment as well as continued and customized cognitive rehabilitation improve the long-term outcome.

A 30 minute Q & A follows the 30 minute presentation. 

Desiree Wolter

Author ~ Our Fox Has Lost His Socks

Story Time for Children of All ages 3 years to 93 years

Cuddle up & View Story Time

Let Mamma Fox, Fox Red and Fox Blue take you on a funny yet sad journey of when, as Dr. Otter explains it “Pappa Fox’s brain is on fire.” Pappa Fox acts out of character, paints everything pink, acts very silly and confused and looses his tidy, white socks. Will life ever be the same for this fox family? Will Pappa Fox ever find his socks again?

A gentle children’s story based on the true events of an Australian family suddenly being hit with a rare autoimmune condition. (Desiree’s family).

After the story time section, the young children in the audience are excused and Desiree shares the true account of when her husband came down with autoimmune encephalitis.

A percentage of the proceeds from the sale of this book will go to support IAES’ mission. Our Fox Has Lost His Socks is an ideal vehicle to explain what it is like for a family when a member comes down with a rare disease, such as autoimmune encephalitis, to friends and family. 

Order the book

Pojen Deng, MD

Assistant Professor, Neurology, Mount Sinai, New York

Topic: Autoimmune Encephalitis: What Psychiatrists Need to Know

View Webinar

Dr. Deng’s presentation gives an overview of limbic encephalitis and what occurs in the disease process that creates these neuropsychiatric symptoms and outlines the red flags psychiatrists, clinicians and laypeople should be aware of that would indicate autoimmune encephalitis could be the culprit to first episode of psychosis (FEP). One of the diagnostic challenges that happens in autoimmune encephalitis is that demographically it often maps directly on the age ranges of first break psychosis. A sensitive and common issue is that many doctors, patients and families are led to view psychiatric illness and encephalitis as mutually exclusive issues, when the reality is that encephalitis very much includes psychiatric illness and requires psychiatric treatment, in addition to neurologic treatment. Many families and patients experience delays in care or, even inappropriate care. Ideally, these two specialties should be working in tandem with the emphasis that both neurologic care and psychiatric care occurs with all autoimmune encephalitis patients.

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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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IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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