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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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Through my eyes: Watching my Dad’s AE journey

Through my eyes: Watching my Dad’s AE journey

November-13-2019 | Ryan J Dinero It’s been a little over two years since I got the phone call from my Mom. I was a sophomore in college and was entirely unprepared for the conversation that was to follow. She explained that my dad had a minor seizure while at work and...

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After 25 Years, a Proper Diagnosis-Autoimmune Encephalitis!

After 25 Years, a Proper Diagnosis-Autoimmune Encephalitis!

October 30-2019 | Lauren Mabry In 1994 when I was 9 years old I was diagnosed with Epilepsy with partial complex seizures after my mom witnessed a bizarre event where my arm jerked wildly and I fell to the ground. These events occurred multiple times and I underwent...

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Introducing the IAES and PennNeuroKnow Partnership

Introducing the IAES and PennNeuroKnow Partnership

October 16-2019 | Carolyn Keating and Sarah Reitz Hello AE Community!   Our names are Carolyn and Sarah, and we are happy to announce the partnership between IAES and our blog, PennNeuroKnow (PNK).  We are working with IAES to learn about topics that patients and...

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IAES Turns 3. Meet Our New Board of Directors

IAES Turns 3. Meet Our New Board of Directors

September 5th, 2019 The IAES Board of Directors is a group of committed volunteers. No board member receives compensation. Therefore, we are especially grateful to have the expertise and talents of these dedicated professionals. Our annual election results bring us...

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A Tribute to Father’s on Father’s Day

A Tribute to Father’s on Father’s Day

June-16-2019 | Michelle Wilson, Mari Davis Wagner and Lisa Hiller Mothers may be the most vocal front line when it comes for advocating with a child who has a chronic illness like autoimmune encephalitis (AE), but Fathers are often the rock.  Our daughter Whitney has...

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I Thought I had the Flu, by Evening I was in Coma

I Thought I had the Flu, by Evening I was in Coma

By: Elizabeth Lowther | June 12, 2019 I started having issues when I was 35. I started having trouble learning a new computer system at work (as an RN). I have never had trouble learning new skills-apps on computers.  I also was having issues with tremors in my arms...

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My AE Journey Began on A Beautiful Summer’s Day

My AE Journey Began on A Beautiful Summer’s Day

By: Lisa Lauter | May 29, 2019 https://www.youtube.com/watch?v=iUJQCRKLILQ    Suddenly, I saw flashing lights in the sky. It was a beautiful summer’s day on July 5, 2017.  The temperature was perfect and there was not a cloud in the sky. My adorable young nephews,...

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When the judge has read the book…

When the judge has read the book…

May 22, 2019 | Julie Ann Fetch Finally, some good news to share with everyone. I just got a favorable ruling from Social Security Disability that I meet their criteria due to my having anti-NMDAr Encephalitis and other autoimmune conditions.I initially applied in 2015...

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Mother’s Day Tribute

Mother’s Day Tribute

May 12, 2019 | Mari Davis, Barbara Layt Vujaklija and Elaine Contarino-Cannella IAES would like to wish all Mothers a very happy Mother's Day! You are dearly loved.  Meet three very special Moms counted among you.  Grace My mother’s name is Grace. It fits her...

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Learning Supports for Children and Young People with AE

Learning Supports for Children and Young People with AE

May 8, 2019  |  Alison Westerkamm and Missy Simpson After a diagnosis of Autoimmune Encephalitis many children and young people will need specialized learning supports to enable them to succeed at school. This blog post explains what Alison Westerkamm discovered when...

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A Diagnosis for Daisy

A Diagnosis for Daisy

A Diagnosis for Daisy April 24, 2019  ,,Shadazah Brown (known as Daisy) I used to get these weird feelings of anxiety. While I was working, talking, shopping, driving (of course I’d pull over) but then it started happening too often. I started having mood changes so...

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Even Doctors Can Learn

Even Doctors Can Learn

March 27, 2019 |  Juliet Jimenez   I found a local endocrinologist at the request of my neuroimmunologist, Dr. Vernino at UT Southwestern. (The FP holistic nurse practitioner I was seeing seemed to be confused about my medications, and they weren't working at all. My...

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Now I am a Strong Woman

Now I am a Strong Woman

March 13, 2019 | Hannah Leasure Hannah Leasure's Mother attempts to give her medication On Christmas Eve 2013, I was admitted to hospital, where I stayed until April 2014. I had the RARE autoimmune disease called anti-NMDA receptor encephalitis. It took the doctors...

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I’ll never have a ‘normal’ Life

I’ll never have a ‘normal’ Life

February 23, 2019 |  Maddy Boehme Great Expectations: Maddy’s Story 10:43 minutes  On my 19th birthday, I had an appointment with my doctor. I was a freshman in college, taking three classes a semester. That was all I could handle.  Every waking day was spent in the...

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The Invisible Disease

The Invisible Disease

February 22, 2019  | Lisa Lauter  World Encephalitis Day - Lisa Lauter Tells Her Story  13 minute video  I was diagnosed with LGI1 Autoimmune Encephalitis (AE) in February 2018. Encephalitis is a devastating brain disease that affects about 500,000 people worldwide. ...

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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 2013 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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