Synopsis
Understanding Hashimoto's Encephalopathy 2016 Edition: An Expanded and Updated Guide for Patients, Families, and Caregivers is the second book HESA has written about this rare autoimmune disease. Hashimoto's Encephalopathy ("HE"), often referred to as Steroid Responsive Encephalopathy Associated with Thyroiditis ("SREAT"), strikes people of all ages, in all walks of life, and takes a devastating toll on patients and their loved ones. This poorly understood disease continues to puzzle physicians and researchers around the globe. As a result, patients with HE often remain undiagnosed for months or even years, if they are lucky enough to be diagnosed at all. 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. At the heart of the book, as was in the first book, are first-person narratives written by HE patients and caregivers around the world, which provide the reader with a glimpse into daily life with the debilitating effects of HE. Patients describe their symptoms, their struggle to find a diagnosis, and their treatment experiences. A separate section is devoted to the stories of pediatric HE/SREAT patients, as told by their parents. Understanding Hashimoto's Encephalopathy offers a comprehensive picture of HE/SREAT that is helpful for physicians, while written in language accessible to the layperson. DISCLAIMER: As with all books, Understanding Hashimoto's Encephalopathy is not intended to be and should not be considered to constitute medical advice.
About the Author
The Hashimoto's Encephalopathy SREAT Alliance ("HESA") is a 501(c)(3) nonprofit organization formed in 2012 by Nicola Nelson, a successful attorney before being stricken with HE/SREAT in 2011, and Susan Foley, who previously owned and operated her own business, while also enrolled in college classes. Despite receiving treatment, severe residual symptoms forced Nicola to retire from her career. Determined not to let her disabilities define her life, she formed HESA along with Foley, and the assistance of her former law firm. As the organization's first Executive Director, Nelson's goal was to share information about HE/SREAT with others. Undiagnosed, but experiencing more symptoms, Foley's neurologist advised her to curtail her busy schedule. Soon diagnosed with HE, and hunting for information, she discovered it was difficult to locate anything helpful. Knowing she was not the only one with this disease, she determined there was a need for updated information. Her thought was to write a book that would include the personal stories of other patients. In a conversation with Nelson, whom she had met through an online community, Foley proposed her book idea. Thus, began HESA and the first edition of Understanding Hashimoto's Encephalopathy. Foley has served as HESA's Executive Director since 2016. The book quickly became an important piece of reading for those with HE, and the women realized that a second book would be needed. It was decided that an updated version would contain interviews with HE specialists from around the world, updated information about the disease, tips for patients and caregivers, a glossary, and resources. And like the first book, personal narratives from the patients. Two years of painstaking work by the two women and other volunteers, despite their cognitive and physical impairments, has resulted in HESA's second publication, Understanding Hashimoto's Encephalopathy 2016 Edition: An Expanded and Updated Guide For Patients, Families, and Caregivers. In addition to books and videos, HESA also provides a continually updated list of the latest scientific articles about HE/SREAT on its website, along with useful information for patients, families, caregivers, and clinicians; oversees two Facebook groups and a HESA Facebook fan page; has a presence on LinkedIn, Twitter, and other social media; and collaborates with other organizations dedicated to encephalitis/encephalopathy, including the AE Alliance and Encephalitis Global.
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