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nire (@nire)

Autoimmune Encephalitis/ Autoimmune Dementia

Autoimmune Diseases | Last Active: Dec 17, 2019 | Replies (7)

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@nire, I applaud you for being such an advocate for your son. In addition to the resources, @johnbishop has shared, you may also appreciate this info from Genetic and Rare Diseases Information Center (GARD) https://rarediseases.info.nih.gov/diseases/11979/autoimmune-encephalitis
What is your next step at this point?

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Replies to "@nire, I applaud you for being such an advocate for your son. In addition to the..."

Thank you Ethan for the website. I’m not really sure what my next step will be. It is constantly on my mind. I read everything I can find on this subject and join groups like this to get ideas. Last night, while at a church Christmas dinner, I met a man that does health documentaries. I approached him about doing one on autoimmune encephalitis/ dementia and all the antibodies that they are discovering. He is very interested, as he is looking for a new project. I’ll let you all know how that goes.
There are so many people and families that suffer with AE and most doctors know nothing about it. Some people have it for many years before it’s found and all that time they were told they had depression and put on strong meds. They have found many people that were in psych hospitals that actually had AE. New antibodies are found every year and I look forward to when it becomes more known to the every day docs. Right now it seems to be only at the big teaching hospitals and even then it’s not caught that often unless they are studying it.

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