Finding Support

There are a number of ways for  patients and caregivers who have internet access to connect with others.

Facebook: (this is a support forum designed for those with HE, their family and friends, as well as those interested in learning more about HE)   (this group is for patients/survivors/caregivers of all types of encephalitis or encephalopathy, including HE) (this group is ONLY for those who have been given a medical diagnosis of HE, and for parents of children diagnosed with HE)

Facebook group for parents of children with HE:

Non-Facebook web-based support group:  (for patients and caregivers of all types of encephalitis/encephalopaty, including HE) (for patients and caregivers of all types of autoimmune diseases, including HE)

Email-based support group:

HELPS at — to join, send an email to:

Webpages and blogs by others who have HE:

  1. September 5, 2012 at 10:34 am

    I have just launched a blog pertaining to my struggles with HE and for the purposes of educating people, and have now included a forum as well. I would love if people would consider sharing their stories there;

  2. sf-4science
    December 26, 2012 at 6:53 pm

    I am looking for a doctor in the San Francisco Bay Area who is knowledgeable about HE. Any suggestions? My endocrinologist doesn’t believe HE exists. While I would be happy to find some other cause for my symptoms (30-90 minute episodes of profound confusion accompanied by heavy sweating), extensive testing seems to have ruled everything else out. I have Hoshimoto’s and have tested positive for anti-thyroid and anti-nuclear antibodies.
    Thanks so much for this site!

  3. Pierre Demers
    May 16, 2013 at 6:23 pm

    please it`s possibility relation during évolution of hashimoto thyroide desease to myxoedema to conduct to hashimoto encéphalopatia , do you have someting on this

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