HESA NEWS
HESA NEWS
HESA Donates Money for Research
We are in the process of formalizing our first grant to Dr. Ahmed Zayed Obeidat and his team and are eager to continue with his team on future research project for Hashimoto's Encephalopathy.
Our Upcoming Book
We at HESA are working hard and looking forward to bring you our next book
UNDERSTANDING HASHIMOTO'S ENCEPHALOPATHY: 2024 EDITION
featuring patient stories, physicians and up to date information.
MORE DETAILS TO COME!
HESA as part of The World Encephalitis Day Alliance (WEDA) are once again hosting a a big event.
This will be a 3 day in person event in Jacksonville Florida for
World Encephalitis Day.
The event will be taking place at the Kinnie Auditorium at the
Mayo Clinic, Jacksonville, FL.
Dr. Josep Dalmau book; Autoimmune Encephalitis, and Related Disorders of the Nervous System.
Maddy Boehme summarizes a section on Hashimoto's Encephalopathy in
Dr. Dalmau's New Book.
For those who are interested, I read the chapter on HE from the recently released textbook “Autoimmune Encephalitis and Related Disorders of the Nervous System” written by Dr. Dalmau and Dr. Graus
The main takeaways from the chapter were as follows:
1. The mechanisms of Hashimoto’s Encephalopathy are still not well understood, included the role of thyroid (TPO) antibodies, thus make diagnosing HE difficult and to some controversial. This has lead to the over diagnosis of HE, which in turn has made it difficult to study the disease (many diagnosed have been incorrectly diagnosed and thus cannot be studied)
2. Hashimoto’s Encephalopathy should follow the proposed diagnostic criteria:
1. Encephalopathy manifested by cognitive impairment and one or more of the following (psychiatric symptoms, myoclonus, seizures, focal neurological deficits)
2. Presence of serum thyroid antibodies
3. Euthyroid status or mild hypothyroidism
4. No findings in neuro imaging studies indicating vascular, neoplastic, typical autoimmune, or structural lesions
5. Absence of well characterized neuronal antibodies (AE antibodies) in serum and CSF
6. Complete or near complete response to steroid treatment
7. Reasonable exclusion of alternative causes
3. A Limbic encephalitis variant of Hashimoto’s Encephalopathy has been speculated and was first described in 3 teenagers with high serum TPO antibodies and imaging suggestive of Limbic encephalitis. The role of TPO antibodies in HE is not understood, and thus the role of TPO antibodies in this possible subtype of HE is not clear.
4. Many misdiagnosis of HE are due to the lack of AE antibody testing performed on BOTH serum and CSF, as some AE antibodies show only in serum or CSF or both. Patients should also be tested for less common AE antibodies such as GABAaR and mGluR5.
5. The presence of TPO antibodies in CSF is not well understood. Only one study has looked into this.
6. The NH2-a-enolase antibody could serve as a marker for HE, but further research needs to be done to explore this potential marker.
All in all, HE needs more research so better understanding of the disease can lead to better diagnostic criteria being established.
An in person face to face meeting with other autoimmune encephalitis patients, caregivers, family members and friends. Chicago, NYC, ...
coming to cities all over the U.S.!
In the 10 years HESA has been in existence, we have published two books,
hosted symposiums, held many webinars and supported so many. One thing we haven't done is fundraising. But now is the time! We want to begin funding our long term goals of research, more education and even more support.
Susan Foley, HESA Executive Director and others interview AE patients about their diagnostic journeys and the struggles that come about along the way.
An virtual symposium for medical professionals who speak about the importance of crossing the aisle and using a necessary multidisciplinary approach among medical professionals.
ASK ME ABOUT HE CAMPAIGN 2021
with HESA and AE ALLIANCE
#AskMeAboutHE
HESA and AE Alliance are raising awareness of autoimmune encephalitis together with our communities by posting pics with the most common ways they are affected by AE.
Patients, caregivers, friends...all welcome!
A virtual event for patients, caregivers and physicians to support our community, educate and promote awareness of various forms of encephalitis.
MADDY BOEHME'S JOURNEY WITH AUTOIMMUNE
ENCEPHALITIS with Quest Diagnostics
Global Genes connects, empowers and inspires the rare disease community.
The organization’s strategy:
"We spread awareness through our website, social media, Facebook support groups, published books, and encephalitis conferences and symposiums. We join forces with other AE non-profits to give us more power to help people with autoimmune encephalopathy. If we cannot help someone, we try to find another group that can."
A discussion with Maddy Boehme and Dr. Robert Weir of UT Southwestern.
A first of its kind event for patients and caregivers
with multiple encephalitis organizations working together
to bring support and education to the
encephalitis community.
“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.
2016 UNDERSTANDING HASHIMOTO'S ENCEPHALOPATHY:
A Guide For Patients and Caregivers Book
In this book, readers will learn the symptoms, diagnostic criteria and challenges, and treatment options for HE, as well as the scientific theories regarding the causes and diagnostic markers of the disease. Throughout the book the reader will find citations and Internet links to scientific articles about HE/SREAT published between 2010 and 2016. New in this expanded edition are interviews with some of the most highly respected clinicians in the world in which they share their knowledge and experience with both researching HE and treating patients with the disease. Additionally, this edition includes tips for living with HE, and an extensive glossary of related terms, acronyms, and medications.