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When it comes to responses by the body, the immune response is usually a good thing. Your body recognizes an invading pathogen that does not belong there: bacteria, a virus, and other substances. In response to these pathogens, the immune system must react in a regulated manner and then shut off when it has solved the problem. But sometimes this goes awry, creating an overactive reaction that does not turn off and can end up harming the body it is trying to protect.
As the 4th and final of the IAES blog series for AE Awareness month 2021 we are honored to present and hope you enjoy the compelling story of the AE journey, thus far, of one of our AE Warrior members, Dominic McDonald and his guide dog Captain! This includes an interview Dominic had with one of his doctors regarding his thoughts about AE and rehabilitation.
On the first day of April 2020 my life was to change forever. I just didn’t realize the depth of which I would fall into this dark world.
I woke in the morning of the first of April to vertigo, something, I had never experienced before, but knew all too well through my nursing training that something was amiss.
I cried with relief and joy over having learned from my Doctor that the testing for the antiLGI1 autoimmune encephalitis antibodies which attacked my brain a little over two years ago were no longer present in my bloodstream or spinal fluid. Sure, I am likely to have residual difficulties with cognitive function and memory, but I at least feel I’m finally on the road to recovery. I cried because I know I’m one of the lucky ones.
“Princesses, they’re just like us.”
My friend Christina once commented that on Facebook, under a picture of Princess Kate. You know, the most beautiful woman in the world. The one whose three children always look clean and like angels. The one who stepped out of the hospital in a slim fitting dress and heels the day after giving birth to her first child. I remember slowly walking out of the hospital in sweats, days after I had my first born, wondering if I’d ever be able to sit down again. Yeah, princesses, they’re just like us.
I recently lost a beloved parent to anti-NMDA encephalitis. It is still hard to talk about it as my sister and I went through many challenges to get her diagnosed. I understand the pain and difficulties that many of you go through with this disease and having physicians or other health care professionals who are unfamiliar with this disease and its treatments.
Autoimmune Encephalitis Awareness Month February 2021. Learn all the activities planned for this year’s awareness month and how you can get involved. Raise awareness for AE to help us save lives.
My name is Catherine Cloutier, and I’m currently 28 years old. My journey with anti-NMDAr autoimmune encephalitis started in April 2015, at the age of 23.
I had previously completed a human nutrition degree at Université de Montréal and I am still practicing as a Registered Dietitian in Québec, and I am a member of my professional order (Ordre professionnel des diététistes du Québec).
Diagnosing a problem in the brain can be a major challenge. Unlike a broken bone,
many neurological problems are extremely hard to see. A computer tomography (CT) scan of
the brain, which is similar to an x-ray, can usually only detect obvious damage, such as bleeding in the brain.
Telemedicine allows patients to have a remote, non-emergency office visit with their health care provider by using a smartphone, computer or tablet. Research shows most patients are highly satisfied with telemedicine visits, and in most instances these visits are as good as in-person visits.
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.
December 24, 2020 | 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....
December 19, 2020 | By WhereAreMyPillows.com
The classic story arc of autoimmune encephalitis goes something like this: a patient presents to the hospital emergency room with an abrupt onset of psychotic features that include hallucinations, paranoia, anxiety, and strange behavioural changes.
December 9, 2020 | By Sherree Bargo
Larissa was born after a normal, healthy pregnancy on May 29, 2007. The next 5 years were seemingly “normal” as she hit all of her milestones on time and ahead of most of them. She was potty trained by 2, reading Dr. Seuss books by memory at 19 months! She was classic first child doing everything early.
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.