Understanding Hashimoto's Encephalopathy 2016 Edition:
An Expanded and Updated Guide For Patients, Families, and Caregivers
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FAQ

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 orgsites.com. 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

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