Blogae wARRIOR pERSONAL sTORIES
AND TOPICS OF INTEREST
November 26, 2020 | By Jeri Gore
I have often pondered over this day throughout my life. From being with loads of family laughing over a huge turkey dinner and all the talk and smiles and analyzing whose stuffing is best and simply being together. To being away at college or jobs that have carried us off and unable to return home for Turkey day.
IAES wishes to honor all those caregivers that have not only loved, helped and never given up on all those with any form of AE but who have also helped all those suffering or have suffered from all forms of illness! Below are some thoughts and writings from both caregivers and those who wish to thank the many caregivers who have helped them.
We honor all of you….
Dysautonomia is a collection of disorders that involve dysfunction or impairment of the autonomic nervous system (ANS). It affects more than 70 million people worldwide, and can be caused by a number of disorders, including autoimmune encephalitis (AE)1. To better understand dysautonomia as a symptom of AE and other disorders, it is helpful to first know how the healthy ANS works.
November 7, 2020 | By Bettina Goodwin, caregiver to her husband Tony
It’s morning and you open your eyes, groaning.
“How do you feel?” you’re asked, as you struggle to find the words to explain the fogginess and confusion — the sheer lack of comfort you feel in your body at that moment — but you move forward, ready to face another day.
October 30, 2020 | Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga by Dr. Robert Larry Reese-Johnson. Jan. 1, 2020 – It was a new year, and based on the progress that he’d made I emailed Dr. Tomatore regarding this progress and questioning, through my research, exactly what tests results were reviewed, what tests were done and how exactly the diagnosis of CJD was made? Dr. Tomatore never responded to this email, nor did he an acknowledge receiving it.
October 28, 2020 | Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga by Dr. Robert Larry Reese-Johnson. Oct. 3 – This was the date in 2019 that this all began for my husband, Reginald Johnson-Reese, and me. I arrived home from work around 5 pm, and saw Reggie on the couch.
October 14, 2020 | By wherearemypillows.com for IAES.
It’s a lovely day in the neighbourhood. The sun is blooming, birds are shining, flowers are sing—wait; that’s not quite how it goes.Then it hits you: oh yeah, your brain is injured.
Every parent or caring adult knows all kids have gone through enough this year that they deserve to have a fun and memorable Halloween celebration, keeping in mind the Covid-19 rules of necessary social distancing.
Trick-or-treating will certainly look and feel different this year (the masks alone will change costumes – maybe with a little creativity for the better!), and you can make sure every child gets to experience the candy, the costumes, and the fun of this truly kid-friendly event. Here are some tricks you can use to make this Halloween a treat for most families.
A NOTE FROM PRITHIMA’S HUSBAND, REELY
I connected with Tabitha at International Autoimmune Encephalitis Society through Facebook thanks to my wife’s cousin soon after my wife was evacuated to the UK. As I was trying to understand the illness better and make sense of things, Tabitha was a vital sounding board for many of my concerns surrounding the research and treatments out there and what to expect. She was always a text and phone call away when I needed her, especially when I was trying to understand the side-effects of different medications. She guided me through every assessment and report I received regarding my wife. Knowing who to turn to for support during a crisis can help you feel less overwhelmed and more able to manage your feelings and reactions, with the knowledge and support from Tabitha, brought hope and peace of mind.
September 26, 2020 | Claudia Lopez-Lloreda, PennNeuroKnow
The Plastic Brain
In autoimmune encephalitis (AE), the body generates antibodies that mistakenly attack neuronal proteins that are important for brain function. Among the most important proteins targeted in AE are neurotransmitter receptors1.
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.
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.
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.
Laura Martin is a 20-year-old college student from Winchester, Kentucky, right outside of Lexington. She was a Kentucky Governor’s Scholar and student at Transylvania University, as well as a standout goalie for the university’s women’s soccer program.
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.
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.
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.
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.
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.
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.
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....
June-10-2020 | Gary Walters December 2019 The last two years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I've done and the way I've...
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...
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...
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...
April 15-2020 | Jackie M. Stebbins Lawyers have two great fears in life: 1) missing a deadline and 2) getting sick. Missing a deadline is scary and keeps us awake at night, but getting sick is about the worst. A simple cold or the stomach flu can require us to...
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...
March-18-2020 | Greer Prettyman, PennNeuroKnow Autoimmune encephalitis (AE) can be hard to diagnose because its symptoms can vary widely and may be similar to symptoms of other illnesses or disorders. When a patient is in the hospital with symptoms that may point to...
Information about the COVID-19 continues to dominate world news and likely will for some time to come. We have prepared a flyer of the preventive measures you can take as recommended by the guidance from the Centers for Disease Control and Prevention (CDC).
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.