The Atlantic has published the story of AE survivor Sasha Egger. Sasha and his parents fight to survive a medical system that too often silos psychiatry from neurology. In telling the story of their son Sasha, Daniel and Helen Egger, co-founders of the AE Alliance, tell the story of many AE families. A story of not being believed. A story of finally finding a doctor who asks the right question. A story eventually of relief, vindication and sadness.
The article asks difficult questions that require reconsideration of some basic beliefs about psychiatric disorders. In the article, Helen Egger, a child psychiatrist, challenges the reader to recognize that psychosis is a symptom, like a fever, of the larger disease. Autoimmune encephalitis is a disease with many symptoms. AE requires rapid diagnosis and appropriate treatment. Too often doctors recognize the symptoms but not the disease.
What do we do with this recognition that psychosis can be a symptom? It is up to us, the AE community, to educate medical professionals and the general public. It is up to us to make sure doctors don’t just treat the symptoms. They must cure the underlying disease. That is the work we all share as part of the AE Alliance.
Thank you Sasha, Helen and Daniel for sharing your story and for challenging the medical community to rethink psychosis as symptom, not always the disease.