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IMPORTANT NEWS REGARDING AUTOIMMUNE ENCEPHALITIS, INCLUDING HASHIMOTO’S ENCEPHALITIS!

HESA (Hashimoto’s Encephalopathy SREAT Alliance), the Anti-NMDA Receptor Encephalitis Foundation, Inc. (Canada), Encephalitis Global, and the Antibody-Negative Autoimmune Encephalitis Facebook group are proud to announce a groundbreaking Symposium to be held on April 6, 2019 at Weill Cornell Medical School, Cornell University in New York, NY,  titled: “Autoimmune Encephalitis: A Bridge Between Neurology and Psychiatry.” 

Autoimmune Encephalitis (and ensuing encephalopathy) can take many forms.  One of those forms is Hashimoto’s Encephalitis/Encephalopathy.  The April 2019 symposium will bring together experts from around the world who are familiar with the troubling fact that autoimmune encephalitis is often misdiagnosed as psychiatric illness due to its presenting symptoms.  Speakers include Dr. Josep Dalmau, whose team is credited with discovering Anti NMDA Receptor Encephalitis in 2006, and who remains one of the top experts on this subject. The goal of the symposium is to facilitate and enhance the dialogue between the disciplines of neurology and psychiatry, thereby increasing physician recognition of the need to test for AE when a patient presents with abrupt changes in mental status that may include severe depression, anxiety, and even psychosis. Watch this space for more details about this exciting symposium.

 

WHO ARE WE?

The Hashimoto’s Encephalopathy SREAT Alliance (“HESA”)  is a 501(c)(3) nonprofit organization formed in 2012 to collect, archive, and share information about Hashimoto’s Encephalitis/Encephalopathy (“HE”), also known as Steroid Responsive Encephalopathy Associated with Thyroiditis (“SREAT”) with the public and medical professionals.  HE is one of the sero-negative forms of Autoimmune Encephalitis/Encephalopathy (“AE”), meaning that the specific autoantibody that wreaks havoc on the brains of these AE patients has not yet been identified in the laboratory.  At least 17 autoantibodies that can cause AE have been identified since 2006.

HESA (image)

“The Hashimoto’s Encephalopathy SREAT Alliance is a 501(c)(3) nonprofit organization formed in 2012.”

Other names sometimes used to describe  HE/SREAT are nonvasculitic autoimmune meningoencephalitis (“NAIM”), and encephalopathy associated with autoimmune thyroid disease
(“EAATD”). HESA takes no position on the most appropriate name for the disease, however on this website we use the abbreviation “HE” as a shorthand way to refer to the condition.

HESA coordinates with other nonprofit organizations around the world, including E-Global, the Autoimmune Encephalitis Alliance,the Anti NMDA Receptor Encephalitis Foundation (Canada) and the Encephalitis Society (UK), to share scientific information, administer and contribute to online support communities for patients and their loved ones, provide speakers for relevant conferences and seminars, and generate funding for research. We appreciate your tax-deductible donations which further this vital work. In April 2019, HESA will be co-sponsoring a Symposium with these organizations, to be held at Weill Cornell Medical School in NY, NY. The Symposium will focus on the problem of misdiagnosis that plagues AE patients, due to the psychiatric symptoms that are a hallmark of the disease.

Disclaimer:

This website is not a substitute for professional advice, and the content here is not intended for use in diagnosing, curing, or preventing disease. The site does not employ and is not overseen by medical professionals. Articles and studies listed here are intended solely for personal use and reference.  

Although you will find a great deal of information about HE/SREAT on this website, HESA cannot provide medical advice. If you have HE/SREAT, or think you may have it, consult a qualified neurologist, preferably one with experience addressing immune-mediated illness.

HESA is not responsible for the contents of links to studies, their errors, omissions, or any malicious software they may contain.

 

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AE Alliance
"The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.


The Encephalitis Society
"The Encephalitis Society is an International organization providing information and support for all causes of Encephalitis."


Encephalitis Global
"Encephalitis Global is a U.S.A. 501(c)(3) non-profit organization formed in 2005 as an alliance connecting encephalitis survivors and caregivers around the world."


Mark2Cure
Scientific literature is growing at a rate of more than 2 new articles every single minute. It is impossible for scientists to consume and understand the rapidly expanding ocean of biomedical literature. You can help biomedical researchers find the information they need to discover cures faster.


RareConnect.org
"Connecting Rare Disease Patients Globally"


RareDisesases.org
"Alone we are rare. Together we are strong.®"


Contact a Family
"For families with disabled children."


Madison's Foundation Provides information about rare diseases and connects parents whose children have the same rare disease.


NIH Health Hotline
Toll-free numbers from the National Library of Medicine's Health Hotlines Database.


HE Notebook - Wordpress Site
A great blog of an HE patient with a trove of information, personal stories, and links to medical studies.

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