Living with Autoimmune encephalitis
A group of conditions in which the immune system attacks healthy brain cells, causing brain inflammation.
Understanding Autoimmune encephalitis
People may have neurologic and/or psychiatric symptoms. Symptoms can come and go but often get worse over days to a few weeks. It may be linked to antibodies against proteins on or within nerve cells, and in some cases to cancer (a paraneoplastic syndrome). It usually occurs in people with no family history.
Signs & symptoms
GARD says symptoms can be neurologic or psychiatric. Examples include:
- Memory and thinking problems
- Seizures
- Abnormal movements
- Trouble with balance, speech, or vision
- Psychosis, aggression, panic attacks, or compulsive behaviors
- Loss of consciousness in some cases
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Autoimmune Encephalitis Alliance and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Autoimmune Association, Autoimmune Encephalitis Alliance, Global Autoimmune Institute
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the immune system attacks healthy brain cells and may be linked to antibodies to nerve cell proteins. Research on why is ongoing. In some cases it occurs with cancer. It usually occurs with no family history.
Also known as: autoimmune encephalopathy
Patient organizations
- Autoimmune AssociationAutoimmune encephalitis · United States
- Autoimmune Encephalitis AllianceAutoimmune encephalitis · United States
- Global Autoimmune InstituteAutoimmune encephalitis · United States
- Hashimoto's Encephalopathy SREAT AllianceAutoimmune encephalitis · United States
- International Autoimmune Encephalitis SocietyAutoimmune encephalitis · United States
- Neuroimmune FoundationAutoimmune encephalitis · United States
- Encephalitis411Autoimmune encephalitis · United States
- The Sumaira FoundationAutoimmune encephalitis · United States
You are more than your diagnosis
Perspectives from people navigating life with Autoimmune encephalitis.
Explore research for Autoimmune encephalitis
Explore actively recruiting Autoimmune encephalitis studies with HealthSpark.
Find actively recruiting studies for Autoimmune encephalitis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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