Hashimotos Encephalopathy (HE) / Autoimmune Encephalopathy

This group site is for those diagnosed, have loved ones, friends, or questions/concerns regarding Hashimoto's Encephalopathy (HE). The HE Group is NOT for other conditions (diagnosed or not) or solicitation of others. Please. Anji hogan-Fesler, Founder/Creator/Survior/Advocate

HE is an autoimmune disorder, is a very rare condition, where ones own antibodies attack neurons in the brain, interfering with brain function.

While Hashimoto's Encephalopathy is believed to be quite rare, it is also likely
that there are many undiagnosed sufferers. Because it is little known and its symptoms are primarily neurological, it is easy to misdiagnose or overlook, and the symptoms frequently lead to mistaken neurological diagnoses. This is slowly changing as researchers around the world diagnose more and more patients, and publish case studies describing diagnosis and treatment.

Some of the most common symptoms of Hashimoto's Encephalopathy include: disorientation, psychosis, tremors, concentration and memory problems, jerks in the muscles and lack of coordination, partial paralysis on the right side, headaches, and speech problems. Sometimes, patients are mistakenly diagnosed as having had a stroke, psychiatric problems, or Alzheimer’s.

This condition can also appear in children and adolescents, but is even more likely to be overlooked in these patients. The symptoms in children and adolescents, unlike adults, frequently include seizures, confusion and hallucinations. A drop in school performance is also a common symptom, along with progressive cognitive decline. Thyroid autoantibody levels should be evaluated in children and adolescents with these symptoms, even when thyroid function tests are normal. (Distinct Pediatric Manifestations of Hashimoto's Encephalopathy Described)

The initial treatment for Hashimoto's Encephalopathy is oral corticosteroid drugs - for example, Prednisone. While Hashimoto's Encephalopathy is a relapsing condition, initially, the use of oral corticosteroids can keep the condition manageable for many patients. Prolonged use of steroid is not recommended and a steroid sparing agent should replace steroids early on.

Although she stopped researching several years ago, Beverly Seminara, a patient advocate, was an early researcher on HE, and was the first to put her information together to share with other patients and practitioners: Hashimoto's Encephalopathy - A Complete List of Published Case Studies. (http://thyroid.about.com/cs/hashimotos/a/encephalopathy.htm)

An updated description can be found on the HESA website www.hesaonline.org

Be sure to visit the other Facebook community for those with HE: "For Those Diagnosed with Hashimotos Encephalopathy / SREAT." Simular to this HE group
but a smaller, more intimate group setting.

One can purchase the HE book featuring stories from those blessed with HE along with their loved ones/caregivers.
Orders can be made on Amazon.com.