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Life Lessons from Eating an Acquired Mussel

Life Lessons from Eating an Acquired Mussel

At the mature age of 19, I decided I needed a sabbatical to escape the stress of my first year at University. It was to be a European adventure, sailing along the Mediterranean, exploring the coastline, meeting new people, understanding different cultures and eagerly tasting amazing food.

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This is Seronegative Autoimmune Encephalitis, 1 Year Later

This is Seronegative Autoimmune Encephalitis, 1 Year Later

September 12, 2020 | By wherearemypillows.com for IAES.

A few weeks ago, I celebrated the 1 year anniversary of my discharge from hospital.
There’s been tons of ups, as well as some downs in the past year—but ultimately, I write this to provide a message of hope to those that are having a hard time with autoimmune encephalitis (AE) right now.

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IAES Celebrates Its 4th Anniversary!

IAES Celebrates Its 4th Anniversary!

September 4, 2020 | By Tabitha Andrews Orth

Dear AE Family, four years ago this month, IAES was born. Prior to that, the co-founders had been working together as administrators of a support group at this very address. Four years ago, experts in the field were few and far between. In the USA you had to travel to John Hopkins, Mayo, Upenn or CHOP for children. It was common to be misdiagnosed, undiagnosed, undertreated, and have a neurologist who was willing to have you be their first case of AE.

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Behaviour Change from Autoimmune Encephalitis

Behaviour Change from Autoimmune Encephalitis

August 29, 2020 | By Greer Pettyman, PennNeuroKnow

Autoimmune encephalitis (AE) is a disorder that can be hard to diagnose. Typically, early symptoms are flu-like, making it difficult to distinguish from many other illnesses. Psychiatric symptoms and behavior changes are often among the first signs of autoimmune encephalitis, especially NMDAR encephalitis, and a majority of patients are seen first by psychiatrists upon entering the emergency room1.

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My Daughter: An Everyday Miracle

My Daughter: An Everyday Miracle

By: Francis Lelis
She was diagnosed with Anti-NMDA Receptor Encephalitis on November 5, 2019. She was 13 years old then, and turned 14 on March 15 this year.

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My Daughter’s Diagnosis—and Her Recovery

My Daughter’s Diagnosis—and Her Recovery

By: Kelly MacDonald Marrero
August 4, 2019, was the day that changed our lives forever—one that we call the perfect storm. A few weeks prior to this day, my daughter Brynn had turned two, with a baby sister born a few months before.

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Limbic Encephalitis

Limbic Encephalitis

July-22-2020 | Nitsan Goldstein, PennNeuroKnow

What is limbic encephalitis?

Limbic encephalitis is a type of autoimmune encephalitis (AE) that targets the brain’s limbic system. The limbic system is a group of brain structures that underlie memory and emotion (Fig. 1). The term limbic encephalitis is slightly misleading, however. The disease does not affect all areas of the limbic system and frequently involves non-limbic regions as well.

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Elaine’s Unknown Fight

Elaine’s Unknown Fight

July-8-2020 | Danielle Davis There are moments where you are enjoying life and never think that anything could go wrong. In December of 2015 our family was hit with a crazy oddity that was nothing we could have ever dreamed.

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Treatments for Autoimmune Encephalitis

Treatments for Autoimmune Encephalitis

June-24-2020 | Carolyn Keating, PennNeuroKnow
As the name suggests, autoimmune encephalitis (AE) is a group of diseases in which the body’s immune system attacks the brain. To treat it, there are a variety of therapies that target different aspects of the immune system.

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Thanks Dad!

Thanks Dad!

June-21-2020 | Leslie Holland My dad and my brain go back more than a few decades. When I was two, he convinced my eldest sister she could teach me to read, which I insisted upon in order to move on from coloring books. It wasn’t that I was bored with Dad reading Dr....

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Aphasia as a Symptom of Autoimmune Encephalitis

Aphasia as a Symptom of Autoimmune Encephalitis

May-26-2020 | Sarah Reitz, PennNeuroKnow.com    Aphasia is a language disorder affecting at least 2 million Americans that impairs the ability to produce or comprehend speech, along with the ability to read or write1. It can result from any injury or disease that...

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My continued story about having Autoimmune Encephalitis

My continued story about having Autoimmune Encephalitis

May-13-2020 | Shadazah Brown (known as Daisy) A year ago we introduced you to Shadazah Brown in her piece, A Diagnosis for Daisy. Today she shares an update to her continuing journey.  December 31, 2019 at 10 p.m., I had a seizure at home. I woke up the following...

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The Unique Nature of Seizures in Autoimmune Encephalitis

The Unique Nature of Seizures in Autoimmune Encephalitis

April-29-2020 | Claudia Lopez Lloreda, PennNeuroKnow  What are seizures? Seizures can be scary events both for people who suffer from them and for their loved ones. Symptoms of a seizure typically include muscle spasms; loss of consciousness; sudden, rapid eye...

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A Look Back at Autoimmune Encephalitis Awareness Month

A Look Back at Autoimmune Encephalitis Awareness Month

April-1-2020 | Barbara Layt Vujaklija, RN Now that frantic February is finally over its time to look back and take stock of what we achieved. World Encephalitis Day (WED) was started by the Encephalitis Society in October of 2013 and has been held every February 22nd...

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Not Stress, Not Lyme, Not Cancer, Not Anti-NMDAr Encephalitis

Not Stress, Not Lyme, Not Cancer, Not Anti-NMDAr Encephalitis

We were just so lucky to have the case taken over by UPenn and a group of physicians that have been integral to the discovery and treatment of autoimmune encephalopathies. Within a week we had a diagnosis of anti-LGI-1 autoimmune disease and a week after that we began immunosuppression therapy via a five-day course of steroid infusions and an infusion of Rituximab.

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Announcing Autoimmune Encephalitis Trivia Cards

Announcing Autoimmune Encephalitis Trivia Cards

The Biggest World Event Occurring in celebration of World Encephalitis Day 2020. The First AE Product in the World! A Real Game Changer. Created by International Autoimmune Encephalitis Society in collaboration with Dr. Josep Dalmau (World renown expert who identified...

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Living in the Moment

Living in the Moment

February-12-2020| by: Kerry Jones I am one of the lucky ones. But, in a way, I think I inadvertently helped make my own luck by contacting the Mayo Clinic when I did. A little over two and a half years ago, my wife and I flew from our home outside of Kansas City, MO...

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AE Awareness Month 2020

AE Awareness Month 2020

International Autoimmune Encephalitis Society founded AE Awareness Month in 2020 to shine a light on Autoimmune Encephalitis. AE Awareness Month is the biggest month of the year for the AE community.  It is a time when the entire community comes together to raise...

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KETO Diet: What is it? Who is it for? And why?

KETO Diet: What is it? Who is it for? And why?

January-28-2020 | Daria Muir, M.D. It is important that we all stay well informed. When a person receives a diagnosis of autoimmune encephalitis, they want to do whatever they can to improve their health. Some will reach for what appears to them to be a positive...

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When Your Brain is on Fire

When Your Brain is on Fire

January-22-2020 | Carolyn Keating, PennNeuroKnow Imagine you’re a bright twenty-something with a new job and a new relationship.  Everything seems to be going your way until you start becoming paranoid and acting erratically.  Then come the hallucinations and...

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When You Need Help with Your Memory Loss

When You Need Help with Your Memory Loss

January -8-2020 | Mari Wagner Davis, RN I have been a nurse since 1985. I was working as a nurse case manager when I was at work in December 2017. A co-worker, who I have worked with for years, noticed I was acting strange- laughing inappropriately, busy but not...

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My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

  December 23, 2019 | Tabitha Andrews Orth  My letter to Santa. ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT Dear Santa, As you know, I have given great thought to my Christmas wish this year.  I hope I have made your 'NICE LIST", as my wish is in the form of a favor....

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Travel Tips for the AE Warrior

Travel Tips for the AE Warrior

December-18-2019 | Mari Wagner Davis, RN Last Summer my husband and I traveled to Italy to celebrate our 25th wedding anniversary. Not only was it special because it was our 25th anniversary, but special because we had survived 2 years after my seizures and diagnosis...

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How does Sleep Affect the Blood-brain Barrier?

How does Sleep Affect the Blood-brain Barrier?

December-11-2019 | Sarah Reitz, PennNeuroKnow Autoimmune encephalitis (AE) is the name for a group of conditions that occur when the body’s immune system mistakes its own healthy brain cells for invaders, leading to brain inflammation that ultimately triggers a number...

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It is the Season When We Give Thanks

It is the Season When We Give Thanks

Barbara Layt Vujaklija | November 28-2019 No matter the origins in your part of the world, during the autumn or early winter there is usually some sort of harvest or thanksgiving festival. A time for people to share the earth’s bounty with friends and family and...

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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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