All of those touched by HE, by other forms of autoimmune encephalitis, or indeed by any type of encephalitis, have the opportunity this spring to attend – and benefit from – the wonderful conference put on annually by Encephalitis Global (“E-Global).
This year’s conference will be held in Seattle, Washington, and begins on the evening of Friday, May 11, 2018. The conference runs through mid-afternoon on Sunday, May, 13, 2018.
These conferences are an opportunity to spend a weekend with others who know and understand just how difficult it is to deal with the problems our illness causes to the brain and central nervous system.
Those who attend the conference will spend a weekend at a nice hotel in Seattle (Best Western) where there will be a variety of interesting presentations throughout the weekend designed for those who are coping with the impacts of encephalitis. Because all of the presentations will occur right in the hotel, where we will also have several meals together, this is an opportunity to learn, to laugh, and perhaps to cry, with others who understand – whether you have HE yourself, or whether you are the spouse, family member, or friend of someone with HE.
The topics of the presentations this year are geared toward improving our ability to cope with the impairments that come along with encephalitis and include:
- An introduction to meditation for those with brain issues – by the founder of a Meditation Studio in Vancouver, BC
- A discussion of the rehabilitation needs of survivors – by an encephalitis survivor who has written a book about her experience
- A series of mental exercises presented by another author and encephalitis survivor designed to help you identify your negative tendencies, defeat your fears, and reach your full potential despite your challenges
- A discussion designed to help both survivors and their caregivers develop greater resilience and coping strategies, by a doctor in Organizational Psychology
- The “do’s and don’ts” of applying for US Social Security Disability benefits, by an attorney (and co-founder of HESA) who became disabled due to HE, along with a Seattle Attorney whose practice focuses on helping people obtain Social Security Disability benefits
- An interactive program titled “Talking therapy for the Encephalitis survivor: how to live with the Post Encephalitis Brain, and how to Identify and Manage Emotions” presented by a Psychiatrist
Attendees often form friendships that continue long past these conferences, and many say privately that being able to spend a weekend talking to and socializing with others who genuinely understand what you are dealing with is at least as rewarding as the formal presentations!
There will be a minimum of two attendees at the conference who have HE, and there will likely be several more (who have not yet signed up). In past conferences, those of us with HE have arranged to have lunch together on Saturday so that we can share our unique challenges with one another, and to see what other HE’ers are up to! Other attendees at the conference typically include people with other forms of autoimmune encephalitis (NMDA-R, Rasmussen’s, ADEM, etc.) as well as those who have survived infectious forms of encephalitis.
A link to the registration information (including additional info about the presentations for this year), is below.
WOODSTOCK, IL, May 05, 2017 /24-7PressRelease/ — The Hashimoto’s Encephalopathy SREAT Alliance proudly announces the highly anticipated “Understanding Hashimoto’s Encephalopathy 2016 Edition: An Expanded and Updated Guide For Patients, Families, and Caregivers.” This new and expanded second edition includes interviews with the top neurologists in autoimmune neurology from around the world. This edition also brings to light the daily struggles of patients stricken with “Hashimoto’s encephalopathy” (also known as Steroid-Responsive Encephalopathy Associated with Thyroiditis).
The book features a foreword written by Dr. Sarosh R. Irani, the world-renowned consultant neurologist, and clinician-scientist, specializing in autoantibody-mediated diseases of the central nervous system. Dr. Irani has said of the book, “Understanding Hashimoto’s Encephalopathy draws on the experiences and knowledge of patients diagnosed with HE, as well as insights from caregivers and clinicians. It offers guidance for future and current HE sufferers who are coming to terms with their illnesses. This balanced and extensive text was written with great care, as a resource guide for this heterogeneous condition.”
The book also prominently features interviews with twelve clinicians who work directly with patients affected by autoimmune encephalitis and the resulting neurological deficits presented by the condition. In addition to the invaluable insights of these clinicians, the follow-up book continues to focus on patient, family, and caregiver narratives which remain the core of the book. The book is rounded out with additional text describing the condition, a chapter offering support for those who have received a diagnosis of Hashimoto’s encephalopathy/SREAT and providing suggestions for how to move forward, and finally, a robust resource section with an extensive glossary.
“Understanding Hashimoto’s Encephalopathy 2016 Edition: An Expanded and Updated Guide For Patients, Families, and Caregivers” is currently available in softcover and will be released in the Kindle digital book format in May of 2017.
Chicago, IL, February 6th, 2017: The Hashimoto’s Encephalopathy SREAT Alliance (HESA) is a 501 (c) (3) non-profit organization, started in 2012 by co-founders, Nicola Nelson and Susan Foley. After both women were affected by the condition commonly known as Hashimoto’s encephalopathy, the women embarked on a mission to collect, archive, and share information on the condition, and offer emotional support to patients, families, and caregivers. This mission was furthered by the publication of the book published in 2013, “Understanding Hashimoto’s Encephalopathy: A Guide for Patients, Families, and Caregivers”, (available on Amazon.com).
“HESA could not be more proud to contribute a portion of our donations and proceeds from both of our books to help further research into autoimmune encephalitis, and by proxy, Hashimoto’s encephalopathy, through AE Alliance,” said Executive Director, Susan Foley.
“The AE Alliance is proud of the long-standing relationship with the Hashimoto’s Encephalopathy SREAT Alliance. We are grateful beyond words for HESA’s generosity. This collaboration allows both groups to look anew at imaginative ways to raise awareness on all autoimmune encephalitis fronts, fight this disease, and lessen the suffering of patients and their families,” said John Spencer, Executive Director of the AE Alliance.
The Autoimmune Encephalitis Alliance improves the lives of patients with autoimmune encephalitis by promoting collaboration in clinical and basic research and by creating a community of patients, families, and caregivers so that no one faces autoimmune encephalitis alone.
The AE Alliance strives to find a cure for autoimmune encephalitis through multi-disciplinary, collaborative research, and clinical care. The AE Alliance is a 501(c)(3) non-profit and all services are free of charge. For more information visit www.aealliance.org.
To learn more about the Hashimoto’s Encephalopathy SREAT Alliance and mission, please visit http://hesaonline.org.
As folks in our support forum may know, we are happy to work with The Cambria Lord Foundation on their #Wear4Rare365 campaign this year. The campaign seeks to create a national (United States) emergency room database, giving ER doctors around the U.S. access to rare disease treatment protocols.
We encourage our #HEFamily and other autoimmune encephalitis patients to get involved either by joining our #Wear4Rare365 day by submitting your story or by contacting the appropriate autoimmune encephalitis group working with The Cambria Lord Foundation.
Our #Wear4Rare365 awareness day will co-incide with our annual #Dazzle4Rare day on August 18th, 2017.
We look forward to hearing from as many of you as possible to help accomplish this amazing and potentially life-saving goal! If you’d like to get involved, you can email HESA via our “contact” page.
As many visitors to our website may already know, University of Pennsylvania has their own clinic manned by Doctors Eric Lancaster and Josep Dalmau. This clinic has it’s own proprietary laboratory which using immunohistochemistry to identify serum and/or CSF samples that are shown to have immunoreactivity with the brain. We are told that these are most often the patients that receive an autoimmune encephalitis/encephalopathy diagnosis from Dr. Lancaster and Dr. Dalmau’s team of doctors at UPENN.
This list may be a great resource tool for patients, families, and caregivers who wish to learn more about autoimmune encephalitis/encephalopathy and the diagnostic procedure at UPENN.
We encourage you to read more on the UPENN website [https://www.med.upenn.edu/autoimmuneneurology/classification.html].
We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.
The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.
Here’s an example of the kind of stories on The Mighty: What Does It Mean to Be ‘Rare’? You Told Us.
We encourage you to submit a story to The Mighty and make your voice heard.
The great folks at the Encephalitis Society have given us the news that Dr. Ava Easton will be sharing her new book, “Life After Encephalitis – A Narrative Approach“, at Harvard University, Columbia University, and Mayo Clinic in Rochester, MN.
In a recent conversation with Dr. Easton about our upcoming second edition of “Understanding Hashimoto’s Encephalopathy” (in which Dr. Easton is featured), she shared with us that she and her team will be in the United States from Novermber 14 to the 20th. If you’re in the area and would like to connect for meet-ups with Dr. Easton and her team, you can contact them easily via Twitter at @encephalitis. You can also email them directly from their website at encephalitis.info.
While the above visits to Harvard and Columbia are closed to the public, the Mayo Rochester event will be open to the public. The date and exact details are to be announced. Once we have details of the Mayo Clinic event, we will be sharing our on Facebook, Twitter, and other social media.
Young Utah father, Tyson Cook, was recently found dead of an apparent gunshot wound to the head. He was reported missing the week of May 23rd following the birth of his second child. A Facebook page was started in hopes of locating Tyson alive but unfortunately his truck was found near the mountains. Shortly thereafter searchers found his body.
Tyson had been diagnosed with Hashimoto’s encephalopathy two months before his untimely death. The family feels that the depression that often comes with HE/SREAT as well as perhaps the medications used to treat his condition lead to his suicide. You can read the family’s statement below.
Many people have asked how Tyson died. We want to share his story so that others can be aware of the rare disease that caused Tyson to take his life. We hope that through sharing his story it can bring more awareness to others and that we can stop the needless loss of life. The reason Hashimoto’s Encephalopathy is so rare is because it is often misdiagnosed.
Tyson has had auto immune issues since the moment he was brought into this world. Growing up he lived with the burden of Alopecia Areata and Vitiligo. These are just a few of the many auto immune diseases he struggled with.
On March 8th Tyson went home from work because his head hurt and was foggy. We found him in a catatonic state on the couch and rushed him to the hospital. Eventually he came back to his surroundings and was more aware; the doctors did multiple tests and told us nothing was wrong and he would be fine. Three weeks later he went into a comatose state so we rushed him to the ER. More tests were ran and with the opinion of multiple doctors he was diagnosed with Hashimoto’s Encephalopathy: a rare disease that even the doctors who diagnosed him knew little about. He got started on medication (predominantly treated with steroids).
Due to his weak auto immune system it was inevitable that Tyson struggled with depression. The medication he was prescribed is known to cause and intensify thoughts of suicide. The doctors were grasping at strings with not knowing how to treat such a rare disease.
Tyson experienced a roller-coaster of symptoms, there were many times where he could not speak or express his emotions. Nodding his head yes or no became a main form of communication. He shared with us how he felt like he was watching himself from a third person perspective and wasn’t in control. One time he shared how he had won the lottery and purchased a home. He believed things that did not happen. The disease was taking over and destroying his mind, to the point that he took his own life.
The Tyson we all knew and loved wanted to live. Tyson didn’t kill himself. The disease did. We are sharing his story in hopes that more people will become aware of Hashimoto’s Encephalopathy and the terrible destruction it causes. The world needs more awareness, more research. We need to stop the needless loss of life!
We were blessed with some really good days we shared with Tyson the past two months since he was diagnosed. We were lucky to express love, laughter, and share time with him before he passed.
We are grateful for the amazing support we have had during this hard time. We have been amazed by the generosity, service, and love from all of you; some complete strangers that didn’t even know Tyson or our family.
Tyson left behind a beautiful amazing wife, a two year old son, and a newborn that was born the same week Tyson left us.
We ask you at this time to share his story and to help out his young family with medical and funeral service costs. We do not want his wife to have the burden of financial struggle on top of everything else she is going through at this time. Thank you so much.
Please read this link on Hashimotos Encephalopathy in the comments below and PLEASE SHARE this post!! We want to inform as many people as possible about this disease.
A Go Fund Me account has been started by the family to help Tyson’s young widow with funeral and other expenses resulting from his death. If you would like to contribute, please see the family’s Go Fund Me page. [https://www.gofundme.com/26qyagfk]