Select Page

Blog

ae wARRIOR pERSONAL sTORIES

 AND TOPICS OF INTEREST

 

Your Potential Self is Infinite

Your Potential Self is Infinite

What started as a journey north from Texas to hunker down during the pandemic in a little mountain town in British Columbia, evolved into a permanent move back to Canada and the realization of a dream to build our forever home on the edge of a lake, surrounded by mountains. I have to keep pinching myself to believe that’s it’s real, but I wouldn’t be here without supportive friends and family.

read more
Why are brain injuries so misunderstood?

Why are brain injuries so misunderstood?

We’ve all heard it. “What the heck? You look fine to me!”
Or “It’s been months! Get over this brain injury stuff! Move on already!”
#1  Blame it on Hollywood!
Movies and television have spread so much misinformation about brain injuries it is practically criminal!!
Hollywood has convinced people that if you have a brain injury you have to look it! You have to drag one foot, or have speech problems, or in some manner “look” disabled.

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
Treatments for Autoimmune Encephalitis

Treatments for Autoimmune Encephalitis

Though it can be challenging for doctors to correctly identify and diagnose autoimmune encephalitis (AE), once patients do indeed receive a proper diagnosis there are treatment options that can go a long way in alleviating their symptoms sending them down the road to recovery.

read more
Friendships After A Brain Injury

Friendships After A Brain Injury

Essentially friends of most brain injury survivors fall into four categories with a small amount of overlap: Friends who knew you before your brain injury; Close friends who are seeing you through the brain injury and recovery; Friends who met you or got to know you during the brain injury and recovery. Friends who are getting to know you after the brain injury and recovery.

read more
Peripheral monocytes and soluble biomarkers in autoimmune encephalitis

Peripheral monocytes and soluble biomarkers in autoimmune encephalitis

Autoimmune encephalitis (AE) is a condition in which inflammation occurs in various regions of the brain. In AE a person’s immune system produces antibodies (proteins) that mistakenly targets components of the person’s own neurons (nerve structures). This can result in inflammation and nerve tissue damage.

read more
Daisy the Amazing Rough Rider: Part 6

Daisy the Amazing Rough Rider: Part 6

I am here! I am still fighting every day, and I sometimes feel this Autoimmune Encephalitis(AE) road to recovery is one rough ride! I suppose on many days and in many ways, I could be called Rough Rider Daisy!

read more
What is a headache?

What is a headache?

In the news or on your favorite medical drama you may have been startled to see patients are kept awake during brain surgery. If not, we’ve included an example here! Although it feels wild to witness awake surgeries, they’re possible because the brain itself cannot sense any pain. Despite the lack of pain sensed by the brain, most people do experience head pain at some point in their life, including headaches.

read more
Why does it feel like we know so little about autoimmune encephalitis?

Why does it feel like we know so little about autoimmune encephalitis?

When you or someone you love is diagnosed with a disease like autoimmune encephalitis, the seemingly slow pace at which research progresses can feel frustrating. It’s hard to watch loved ones suffer while wondering why someone hasn’t used their knowledge and resources to find a solution that will make them feel better.

read more
AE Awareness Month 2023: Brain on Fire

AE Awareness Month 2023: Brain on Fire

As we head into February 2023 and Autoimmune Encephalitis Awareness month 2023, we, the staff at IAES, are super excited about how far awareness has come for Autoimmune Encephalitis. There is ever increasing treatment options for AE, ongoing research and clinical trials, increased membership (which speaks to awareness), ongoing recognition, and increased knowledge of more and more types of AE.

read more
Psychiatric Manifestations of Autoimmune Encephalitis

Psychiatric Manifestations of Autoimmune Encephalitis

Psychiatric problems are common in autoimmune encephalitis and can imitate mental health conditions, for example psychotic illnesses like schizophrenia. It is important to separate patients with AE from those with mental illness as treatments are very different.

read more
What are the different types of autoimmune encephalitis?

What are the different types of autoimmune encephalitis?

Receiving a diagnosis of autoimmune encephalitis can be a stressful and uncertain time for many patients and their families. And to make it even more confusing, doctors often don’t just give patients a diagnosis of autoimmune encephalitis, but rather anti-NMDAR or anti-Hu or anti-GABAA encephalitis.

read more
Holiday Gift Guide for Those with Neurological Issues

Holiday Gift Guide for Those with Neurological Issues

The holidays are a busy time for everyone. For those of us with neurological issues and for those that care for us, this busyness may seem overwhelming at times. In 2021 Brain & Life magazine published an article that may make one part of the holiday season a small bit easier and much more fun.

read more
How does the brain heal from autoimmune encephalitis and why is there so much variability in the healing process?

How does the brain heal from autoimmune encephalitis and why is there so much variability in the healing process?

The holy grail! The million-dollar question! How long will it take to get rid of AE, to heal from AE…when will we feel and act ‘normal’ again? Why do we not understand more of the healing process’ from a diagnosis of autoimmune encephalitis?
Kara McGaughey and the team at PennNeuroKnow help us further understand just how complex and individual our brains are!

read more
Fatigue and Autoimmune Encephalitis: You’re Not Alone

Fatigue and Autoimmune Encephalitis: You’re Not Alone

Imagine you just pulled out a load of laundry from the dryer, and as you begin to get into the groove of folding clothes, out of nowhere, you have a profound loss of energy (1). What you are experiencing is called fatigue. Fatigue is different from drowsiness or sleepiness. For example, drowsiness is the need for sleep whereas sleepiness is the likelihood of being able to fall asleep (1, 3). To clarify, fatigue is the overwhelming feeling of tiredness, weakness, and a complete lack of energy (3).

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 Honorable Mention

Caregiver Honorable Mention

Geoff has been my rock throughout the ups, downs and all the shenanigans called Autoimmune Encephalitis. I was at work when suddenly I had seizures. No warning, no nothing. I was admitted to the intensive care unit and was intubated. Geoff was there.

read more
Rare and Seronegative Autoimmune Encephalitis

Rare and Seronegative Autoimmune Encephalitis

Seizures (or sudden, uncontrolled electrical disturbances in the brain) are a common initial neurological symptom that occurs in people with autoimmune encephalitis. In autoimmune encephalitis a person’s immune system mistakenly targets different proteins in their brain causing damage and inflammation.

read more
Epilepsy and Autoimmune Encephalitis

Epilepsy and Autoimmune Encephalitis

Seizures (or sudden, uncontrolled electrical disturbances in the brain) are a common initial neurological symptom that occurs in people with autoimmune encephalitis. In autoimmune encephalitis a person’s immune system mistakenly targets different proteins in their brain causing damage and inflammation.

read more
Cognition in autoimmune encephalitis

Cognition in autoimmune encephalitis

Autoimmune Encephalitis is a rare disease that affects different regions of the brain. Patients with this condition can have a variety of cognitive symptoms (for example, memory deficits, slow speed of information processing, attention lapses, word finding difficulties, trouble with following complex commands, difficulties in judgement, difficulties in comprehension of complex tasks, difficulties in forming new memories, and difficulties in understanding tasks or situations)

read more
Points of Light Award: A beacon of light, love and hope for all of us!

Points of Light Award: A beacon of light, love and hope for all of us!

Our very own International Autoimmune Encephalitis Society President and founder, Tabitha Orth, has been honored with the Points of Light award! Tabitha & IAES would like to thank Points of Light for this honor. It is our fondest hope that all those suffering from Autoimmune Encephalitis, their caregivers, families, and friends have a less traumatic AE journey through the services IAES provides.

read more
Independence Day!

Independence Day!

If you have Autoimmune Encephalitis or are a loved one or caregiver of someone with AE, you know dependance. The AE Warrior is dependent. We are dependent on many things be it friend’s and family’s ability to take us to doctor’s appointments, rehab, food stores or for a simple ride around the countryside.

read more
Jackie Stebbins’ Book Release – Unwillable

Jackie Stebbins’ Book Release – Unwillable

Autoimmune Encephalitis Warrior and now author, released her first book regarding her AE journey to great acclaim in early June 2022! We are proud to support Jackie, to further AE awareness and to celebrate a very happy ending!

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 »