When I talk about autoimmune encephalitis, I often get the question “How many people have autoimmune encephalitis?” My answer, “We don’t know.”
The first few times I was asked these questions, I was apologetic for not having an answer. I would answer, “This disease is so new the doctors haven’t yet compiled the statistics.” Or “we really don’t have a good handle on the incidence rate.” These are both true but miss the bigger picture.
The numbers matter, but the faces tell the story. Across the country families are telling us their stories. Kids and adults, male and more often female who are living with AE. Most of them have felt alone in their struggle to convince a medical community that something is wrong; alone in their struggle to find services; alone in handling the fear of an unknown ailment.
My family has seen the face of AE in our house and in our community. It is because of these faces that Leslie and I along with Helen, Daniel and Susannah started the Autoimmune Encephalitis Alliance. Connecting faces, both patients and doctors, is the core mission of the AE Alliance as we seek to improve diagnosis, treatment and care for everyone with AE.