Select Page

Blog

ae wARRIOR pERSONAL sTORIES

 AND TOPICS OF INTEREST

 

Genetic Predisposition for Autoimmune Encephalitis

Genetic Predisposition for Autoimmune Encephalitis

It turns out that some types of AE, like limbic encephalitis, are more closely tied to genetic risk factors than others7. The main genetic factor that has been associated with limbic encephalitis is called human leukocyte antigen (HLA).

read more
Guilt and Forgiveness

Guilt and Forgiveness

By definition, guilt is like shame. Or pride or embarrassment. It has been described as a self-conscious emotion, one that involves reflection on oneself and sometimes on others.

This is a subject that is difficult for AE Warriors, caregivers and medical personnel on so many levels. As 2020 turns into 2021, I believe this is worth taking a look at, talking about, facing head-on — and putting to rest — in a kind and loving way. Turning over a new leaf, so to speak, as we head into a joyous, healthy and prosperous 2021.

read more
Introducing: IAES Video Blogs

Introducing: IAES Video Blogs

The International Autoimmune Encephalitis Society, (IAES), is excited to announce the roll out of a new information resource, video blogs (VLOGS). This ongoing video series will be an addition to our popular IAES Blog articles.

read more
Why getting better at baseball might require just a little sleep

Why getting better at baseball might require just a little sleep

Not every experience you have or fact that you encounter turns into a long-lasting memory. Many of these moments slip away, while others become stable, long-lasting memories in your brain. This process of stabilization, called memory consolidation, is influenced by many aspects that impact learning. One such factor is sleep, which is critical for the consolidation of a memory.

read more
Rehabilitation Strategies

Rehabilitation Strategies

My name is Mari Davis, and I am the Support Services Coordinator with the International Autoimmune Encephalitis Society. I was diagnosed with limbic encephalitis almost 5 years ago after having seizures at work. After being diagnosed with AE, I received plasmapheresis, IVIG and steroids. Due to ongoing seizure issues, I remain on seizure medications, and I continue to have memory issues.

read more
The Episode

The Episode

On this day of Thanksgiving in the US and in honor of Caregiver Awareness month, the staff at IAES wish all of you a blessed and thankful day!
We are honored to share with you a poem written by a very special caregiver of one of our members.

read more
5 Ways to Answer “How Can I Help”

5 Ways to Answer “How Can I Help”

Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

read more
Caregiver’s guide to self care & avoiding caregiver burnout

Caregiver’s guide to self care & avoiding caregiver burnout

A caregiver is anyone who assumes a significant level of responsibility for another person. This could be a family member, friend, or home healthcare worker. Caregivers demonstrate selflessness, commitment, and duty every day. But they also take on emotional and physical burdens that can become overwhelming.

read more
Ataxia and Autoimmune Encephalitis

Ataxia and Autoimmune Encephalitis

Imagine you are at a playground with your friends playing hopscotch. It is your turn. You jump with both feet, hop on one foot, hop on the other, all just to get to the end. This type of motor control and balance is controlled by a particular brain structure called the cerebellum.

read more
Halloween Ideas

Halloween Ideas

Every parent or caring adult knows all kids have gone through enough during the past few years. They deserve to have a fun and memorable Halloween celebration, keeping in mind the Covid-19 rules and mandates still in place in many states and countries.
Trick-or-treating was certainly different last year and may be this year as well.

read more
A Letter to Mom

A Letter to Mom

Dear Mom,

It has been a while since I have written you a letter. I apologize. There is a lot to tell you and talk about. I suppose the emotion of it all made it tough for me. Still, no excuse, you are my Mom and I love and miss you dearly and always will.

read more
PANS and PANDAS: What are they and how do they relate to autoimmune encephalitis?

PANS and PANDAS: What are they and how do they relate to autoimmune encephalitis?

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is an autoimmune condition that occurs in children as young as three years old1. It is difficult to know how common PANS is due to the difficulty in diagnosing this relatively newly-recognized disease. PANS results in a very rapid (seemingly overnight) development of obsessive-compulsive behaviors in previously healthy children.

read more
Autoimmune Encephalitis and Eating Disorders

Autoimmune Encephalitis and Eating Disorders

Eating disorders impact the lives of millions of people around the world, with negative effects on the physical and mental health of people with these disorders as well as their families and friends. In 2018, the estimated prevalence of eating disorders in the United States was 4.6%. Caretakers of relatives with eating disorders also report impaired mental health with feelings of anxiety, powerlessness, sadness, and desperation.

read more
Daring Daisy Part 4

Daring Daisy Part 4

Being in and out of various hospitals has become second nature to me. The hospitals and staff are like my second home and family in many ways. Between getting weekly infusions and having issues with high and low blood glucose levels due to AE has me in various hospitals all the time. I had surgery last year to put an arteriovenous (AV) fistula in my arm. The surgery and recovery process were difficult.

read more
A Detailed Look Inside The Human Brain

A Detailed Look Inside The Human Brain

We all appreciate the complexity of the human brain. While our hearts, lungs, and livers are very similar to those of other mammals, our brains are what distinguish us from our primate ancestors. Humans learn, communicate, adapt, and connect with each other like no other species on Earth. But until recently, the true complexity of the human brain was still a mystery. Scientists often use animal models to study the brain because of how difficult it is to gain access to human brains both technically and ethically.

read more
We Shall Overcome

We Shall Overcome

It was July 4, 2013

I sat in a plastic chair with my arms wrapped around my knees curled up with my toes pointed to the floor. Non-responsive. Catatonic. I was not aware of the date, as I sat unmoving holding that position from 6am on July 4th until 1 a.m. on July 5th.

read more
Who’s Who in the World of Physicians?

Who’s Who in the World of Physicians?

The staff at IAES is proud to present a different type of blog. During the course our AE journeys each of us has had the pleasure of being treated by and interacting with what seems like an overwhelming diversity of doctors, specialists, nurses, and therapists. We have all had challenges keeping them straight. At times we have all had problems with knowing who to ask what, how to ask and where to go for assistance. AE is overwhelming enough and keeping all the medical personnel straight can sometimes make it even more challenging.

read more
Creativity in the Brain

Creativity in the Brain

Creativity can often feel spontaneous and out of our control. It can hit us all at once, seemingly coming out of nowhere. Then there’s writer’s block. The struggling, uninspired artist. The elusive solution. Scientists have long been trying to understand creativity by uncovering its biological basis. What is happening in the brain when we have that lightbulb moment? To tackle that question, we first have to ask: what needs to happen in the brain to switch on the light?

read more
Father’s Day 2021

Father’s Day 2021

IAES would like to celebrate the fathers and men in our lives. Every year in June we have a day that celebrates Fathers. It is our belief that we celebrate these men every day. These are the men that have helped us become who we are. These are the men who have shown us support, told us stories with a sparkle in their eye, laughed and cried with us, and danced the dance of life with us! It is our sincere hope you enjoy the two stories below that highlight the role of the magnificent men in our lives….Happy Father’s Day!

read more
Raising Awareness of AE During the Recovery Period

Raising Awareness of AE During the Recovery Period

It’s been about five months since my last blog entry. Medical progress has been slow. But….positive progress on many fronts has been made! I submitted a press release regarding AE and my first blog and the story has received national press coverage here in Australia! I’ve been stable on my current medications and I refuse to back off or wean off the meds for fear of returning symptoms.

read more
Brain Beats

Brain Beats

Have you ever put on music to help you study? Or to calm you down after a stressful day? Maybe you’re scrolling on Youtube right now trying to figure out what to listen to next…Well, have you ever considered listening to binaural beats?

read more
This is what it took to lift me out of an autoimmune encephalitis relapse

This is what it took to lift me out of an autoimmune encephalitis relapse

The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.

Is it safe to fly? Will I regret this later?

At the very least, the destination promises to deliver on novelty, excitement, and energy—qualities that had been missing from much of the past year. As we reach cruising altitude, my nerves are gradually dampened by daydreams of stepping inside iconic landmarks, taking in a show, and sating my photographer heart with vistas of an expansive skyline. Soon, my imagination is running wild with all the things to experience as a first-time visitor to the City That Never Sleeps.

read more
Honoring Mothers in the Autoimmune Encephalitis Community

Honoring Mothers in the Autoimmune Encephalitis Community

How this piece by Erma Bombeck came to me will always be fresh in my memory. There was a synchronicity to it that touched my heart. Our son Matthew is now 30 years old. When he was four, I was fortunate enough to be accepted into a very elite advocacy training program for people with disabilities called Partner in Policymaking. Raising a child with autism is hard. Attending a yearlong program that met for a 3-day weekend each month was challenging for Jim and me as Matthew required 24/7 care and without back-up, that meant Jim would only get a few hours of sleep a night during those periods.

read more
Accidental Lessons from a Sleep-Deprived Life Coach

Accidental Lessons from a Sleep-Deprived Life Coach

I am an Autoimmune Encephalitis (AE) survivor. I’m also a life coach.
Meaning matters and it’s taken me years to ascribe my AE journey any meaning beyond “Why me!?” My story may be just like yours or infinitely different, but one thing I’m sure of is that you’re not nuts.
This is not game over. You will feel okay again and I look forward to one day reading your resilience story.

read more
Depression in Autoimmune Encephalitis

Depression in Autoimmune Encephalitis

Major depressive disorder, commonly called depression, is a disorder that affects more than 168 million people worldwide1,2. Symptoms include depressed mood, lack of energy, loss of interest/pleasure, sleep disturbances, significant weight changes, and thoughts of suicide3. While depression can occur on its own, which is known as primary depression, it can also be caused by other diseases or medical conditions. This form of depression, called secondary depression, is relatively common in patients diagnosed with chronic illnesses, and is one of the key factors resulting in an impaired quality of life experienced by patients with chronic diseases.

read more
Aunt AE, Three Countries, and a Superhero Family

Aunt AE, Three Countries, and a Superhero Family

It’s been a rough 10 days. That family member with the huge personality that everyone tries to avoid, moved in again…the one that takes over your household, no matter how hard you try to keep control. The one that makes everyone run around like crazy, makes everything spin out of control and for which you can do everything to the best of your knowledge and capability, but it just isn’t good enough!

read more
Daisy’s Ongoing Journey

Daisy’s Ongoing Journey

I sit here and think about how to begin and write the third part or story or chapter in my AE journey. It is difficult because many days I am confused, tired and lose focus.
I have AE GAD65 Stiff Person Syndrome. My ongoing symptoms include many things one of which is the inability, at times, to be able to focus.

read more

Archives

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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Translate »