Frequently Asked Questions
What is Autoimmune Encephalitis?
Autoimmune Encephalitis (Encephalopathy) is a rare treatable group of CNS disorders that can be progressive or relapse-remitting. It is caused when the immune system makes auto-antibodies that are not supposed to be there. These auto-antibodies (aka antibodies) begin to attack healthy cells and tissues in the brain or spinal cord wrongly identifying them as foreign. An autoimmune response is now occurring as the body’s immune system mistakes its own healthy brain cells for invaders causing inflammation of the brain. Your own body’s immune system is attacking your brain. You are the victim of “Friendly fire”.
The antibody attacks by targeting special receptors in the brain. The antibodies can target the attack to receptors on the cell surface of healthy nerve cells in the brain or target the attack to synaptic receptors that are exposed to the attacking antibody or ion channels. These antibodies bind to the healthy brain cell on the outside of the cell. These antibodies are called extracellular because they bind or attach themselves to the healthy brain cells outside surface. The healthy brain cells are now destroyed or no longer function properly. Severe brain inflammation occurs. The brain now malfunctions. All brain functions can be compromised: emotions, psychosis, memory, cognition, problem solving, speech, movement, seizures, balance, visual processing planning, sensory, hunger, thirst, behavior and personality traits, often followed by suppressed levels of consciousness and coma may occur.
Most importantly, Autoimmune Encephalitis IS TREATABLE and almost invariably responds to immunotherapies with considerable potential to reverse the impairments caused by these attacking antibodies. Immunotherapies can slow down the progression of the disease, stop the antibodies from attacking and with some treatments kill the attacking antibody which may sometimes leads to complete recovery. There is no cure for AE, but cases can be cured. Although ‘complete recovery,’ defined as ‘the disease is no longer present, is possible, most patients face years of treatment and rehabilitation. Many are left with various levels of brain injury.