Visit our new website

Understanding Hashimoto's Encephalopathy 2016 Edition:
An Expanded and Updated Guide For Patients, Families, and Caregivers
– Now Available on Amazon
Follow us on Facebook, Twitter, LinkedIn, Pinterest, and Instagram!


We will attempt to address and answer some questions we are frequently asked by members of our HE/SREAT community both on Facebook and on other social media. 

How many diagnosed cases of HE/SREAT are there in the United States?

This is a question we have been asked a few times via messages on social media. Older literature seemed to suggest a fairly low number of diagnosed cases. The estimates you may read in older studies may reflect the number of published cases of HE/SREAT. It was suggested on one of the first websites dedicated to information about HE/SREAT that there were only 12 documented U.S. cases. However, we have seen from our group of over 200 members of our “For Those Diagnosed with Hashimoto’s Encephalopathy” Facebook group, that number is not accurate. More recent literature seems to have strayed from providing an estimate on how many patients currently have a diagnosis of HE/SREAT.

As information becomes available on just how many documented cases of HE/SREAT there are currently, we will keep readers updated.

How many diagnosed cases of HE/SREAT are there in the World?

At this time, an exact number is unknown and new patients step forward frequently on social media and in our support forums online. There have been studies that report diagnosed cases of HE/SREAT turned out to be another form of autoimmune encephalitis or another neurological condition. 

As information emerges in the future about documented cases of HE/SREAT, we will update this page.

What was the first website to talk about HE/SREAT?

We don’t know for sure but one of the earliest, and potentially the first, website to publish any information about HE/SREAT was Beverly Seminara’s website on Beverly’s site indicates she was diagnosed with Hashimoto’s encephalopathy back in April of 1996. Her website still exists and is a very good source for early information on HE/SREAT and also some interesting blog-type posts from Beverly about her experience.

You can find Beverly’s website at Hashimoto’s Encephalopathy – A Complete List of Published Case Studies. Please note this website does not appear to have been updated since 2005 when the last case studies are noted.

Last edited by Web Team on June 20th, 2016

Giving Assistant

Donate to HESA via Giving Assistant when you shop online.


Find Our Page On The Mighty

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.


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."

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.
"Connecting Rare Disease Patients Globally"
"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.