WHAT IS HESA?

LOGO HESA

 

HESA – the Hashimoto’s Encephalopathy SREAT Alliance – is a 501(c)(3)  nonprofit organization formed in 2012. It is HESA’s mission to collect, archive, and share information regarding Hashimoto’s Encephalopathy (“HE”), also known as Steroid Responsive Encephalopathy Associated with Thyroiditis (“SREAT”) or simply Autoimmune Encephalopathy (“AE”) with the public and medical professionals.

Other names 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 the abbreviation “HE” is generally used as a shorthand way to refer to the condition.

HESA has published a book, “Understanding Hashimoto’s Encephalopathy” which is available for sale at Amazon.com by clicking on this link: “Understanding Hashimoto’s Encephalopathy” HESA also raises funds to support scientific research, and is planning a documentary film project. HESA’s website provides information and links to a variety of resources for patients, physicians, caregivers, and others interested in this poorly understood disorder. We appreciate your fully tax-deductible donations (see the Donate link above).  Please also consider purchasing a HESA cookbook, featuring easy to prepare recipes submitted by HE patients. All proceeds go to support HESA.

PLEASE NOTE!

Although you will find a great deal of information about HE/SREAT on this website, the site is not written, monitored, or maintained by a physician. The site is intended to provide information only. 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.

Nothing on this website is – nor should it be considered to constitute – medical advice.

4 thoughts on “WHAT IS HESA?”

  1. Thanks for this. I did not realize that there was finally a Book published about us. I have Ordered it and look forward to reading it. We need to stick together. There are so few of us. We are our best hope for getting help and passing on advice. THANK YOU!!

  2. I am trying to find out more about HE. I suspected my mom has had it for more than 4 years but I could not get a doctor to test her for it until last November and when the test came back positive, the neurologist said it must be a false positive. I called Mayo Clinic Laboratory, where the test was performed, and asked what percentage of their tests are false positives. They said that they are extremely careful in their testing and advised me to find a different doctor.

    I did take my mom to UCLA and the neurologist there is on the fence, says the positive HE test can be due to age, same with elevated protein in her spinal fluid. My mom’s symptoms, (mainly memory loss, delusions, disorientation, sleep problems, etc.), came on suddenly after my mother was taken off thyroid medication for hypothyroidism. But getting her back on thyroid medication did not bring her back to her old self. Her symptoms have not really changed since this started, there doesn’t seem to be progression. She doesn’t have seizures or tremors but has a history of TIA’s which I feel may be thyroid related because once I changed her diet and got her on the right kind and dose of thyroid meds and supplements to lower her high cortisol levels, her high blood pressure, high cholesterol, etc, disappeared.

    Experts with the Alzheimer’s Association sas there is no way my mom has Alzheimer’s. Those in the know at the American Heart Association say it’s not vascular dementia. My mom doesn’t have symptoms of Lewy Body dementia except for the traits common to most dementias. Even my own brain specialists for Lyme disease, which includes two neuropsychologists from Cedar Sinai in LA, say my mom’s dementia is not like any permanent dementia. I just don’t know where to turn.

    1. If you feel that you mother has H.E. then make sure they check absolutely everything. Be especially careful if you notice shifts from paranoia, psychosis, and delusions. I have recently been diagnosed with H.E. and am lucky to be able to tell you this story.

      About three weeks ago I was walking out of work after a twelve hour shift, I walked out the front door and saw an ‘aura’ in this case a giant bird flying at me. I then experienced a 3 and a half hour Grand Mal seizure. It came on quick and it came on hard. I do not remember anything two days prior to this event. I was placed in a medically induced coma for three days and by the grace of god woke up.

      I had gone to another hospital after a weekend of intense hallucination, psychotic episodes, depression, manic and delusional behavior and was brushed off. This was 9 days prior to the Grand Mal episode.

      My point is that if you feel your mother has H.E. then press for testing, and quickly. Remember that it is a hail Mary when Doctors test for this condition, but push anyway. You could save her life and lower her chances of the more debilitating effects of this hellish disease.

      Thank you and God bless you and your mother.

  3. I had forgotten to post about the hospital that diagnosed and treated me. I see that you went to UCLA for this so I’m assuming you live in or around Los Angeles. If you have the means then I highly recommend going to Fletcher Allen here in Vermont for a consult. The team at this hospital is amazing.

    Thank you again.

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A non-profit organization dedicated to shining new light on Hashimoto's Encephalopathy, also known as Steroid Responsive Encephalopathy Associated with Thyroiditis, or simply Autoimmune Encephalopathy