Finding Support

The diagnosis of a rare disease or chronic illness can be frightening. When patients hear the words “treatable but not curable”, many questions may come to mind, especially questions
about finding support and others with the same condition. We provide this list of internet-based resources for those with a diagnosis of HE/SREAT, for those who would like to communicate with patients and/or caregivers around the world, or locate more information.

While HESA volunteers take part in our Facebook Groups, we are unable to provide qualified medical advice or treatment suggestions. Please carefully consider any patient-to-patient advice and discuss with your qualified physician or medical team prior to acting on any advice which is unproven or may be harmful. Due caution should be used when evaluating any group or support forum for the advice it provides.

Our Facebook Groups:

For Those Diagnosed with Hashimotos Encephalopathy / SREAT – This group is for those who have already received a medical diagnosis of Hashimoto’s Encephalopathy/SREAT, and for the parents of children diagnosed with HE/SREAT.

The Understanding Hashimoto’s Encephalopathy – A Support Forum  – This is a Facebook support forum for those with HE, their loved ones, and those who want to learn more about HE. This forum also shares information about the corresponding book, “Understanding Hashimoto’s Encephalopathy: A Guide for Patients, Families and Caregivers.”

HE/ AE Children’s group (Lets talk) – This is a Facebook support forum for young people with HE/SREAT and their parents. The group was created to allow young people with HE/SREAT to talk to one another for support and understanding.

Other Facebook Based Support:

There are several Facebook groups and organizations on the internet which provide an outlet for patient stories, exchanges of information, and support. Below are a few that patients, families, friends, caregivers, and those seeking more information about HE/SREAT, as well as other forms of autoimmune encephalitis/encephalopathy, may find useful.

Children with Hashimoto’s Encephalopathy – This Facebook group provides support and information for parents of children diagnosed with HE/SREAT.

Encephalopathy also named HE/SREAT – This group is specific to Hashimoto’s encephalopathy patients and caregivers, and is a good resource for those who believe they might have HE and want to learn more.

Encephalitis Global – this group is for patients, survivors, and caregivers of all types of encephalitis or encephalopathy, including HE/SREAT.

 

Other web-based support:

Encephalitis Global Support Community – for patients and caregivers of all types of encephalitis/encephalopaty, including HE.

Autoimmune Diseases Support Community – for patients and caregivers of all types of autoimmune diseases, including HE/SREAT)

email-based support:

HELPS at Topica.com — to join, send an email to:  
[email protected]

 

 

Last edited by Web Team on June 20th, 2016