About
Autoimmune Encephalitis, or simply AE, is a group of conditions where the immune system "attacks" healthy cells in the brain. This attack on the brain causes inflammation, known as encephalitis. This inflammation is what causes the symptoms, however the symptoms vary greatly depending on which cells in the brain have been targeted. This is why one person AE may experience specific psychological symptoms, another may have heavy neurological impacts, and another could have a pretty even mixture of both.
AE affects roughly 5-10/100,000 people per year, which is not many! It is tricky to diagnose as it mimics many other conditions. Diagnosing this condition early is crucial to the recovery as the earlier it is diagnosed, the earlier treatment can stop the attack on the brain, therefore reducing symptoms.
SYMPTOMS
- New onset of nervous system dysfunction (such as — but not limited to — cognitive, memory, balance, coordination, vision, or hearing impairments)
- Slow or slurred speech
- Seizures, not explained by a pre-existing seizure disorder
- Involuntary movements
- Behavioral changes (such as agitation, confusion, compulsion)
- New or exaggerated psychological disturbances (hallucinations, paranoia, anxiety, panic attacks)
- Sleep disturbances
- Weakness or numbness in any part of the body
- Decreased level of consciousness (from severe fatigue to unresponsiveness or catatonia)
GENERAL CARE
SPECIALISTS
- Immunologist
- Neurologist
- Neuroimmunology
- Epileptologist (if seizures are involved)
- Psychiatry
- Symptom-based therapies (occupational, physical, speech therapy)
BLOOD TESTS
- Antibody titers
- Inflammation markers
MEDICATIONS
+ Steroids ("First Line" Treatment)
METHODS OF HEALING
As you get into the AE world, you'll often hear "First Line" and "Second Line" treatments. First-line treatment consists of removing the trigger, which could be a variety of things from teratoma to infection. After the trigger is identified, first-line treatment will focus on suppressing the immune system, typically using steroids to help ease those attacks on the brain cells and removing the antibodies causing those attacks through processes known as IVIG and Plasmapheresis. For some, stopping the trigger is enough and they may only experience the first "phase" of first-line treatment, others may run through the whole gamut and still need a bit of help. This is where second-line treatments begin. Second-line treatments focus on targeting the immune system through stronger immunosuppressant medications and rehabilitation of lost skills, if needed.
RESOURCES
Here are some great links and resources to help you as you navigate your Autoimmune Disease.
HAVE QUESTIONS OR NEED MORE SUPPORT?
EMME
AUTOIMMUNE STORIES
Their stories are brave, honest and intimately revealing of their diagnosis, their successes, their hardships and their lives. Sharing their stories allows them to put words to their journey while providing inspiration to others with an autoimmune disease.
