Living with Encephalitis lethargica
A rare brain illness with fever, headache, double vision, extreme tiredness, and movement problems, with an unknown but possibly viral cause.
Understanding Encephalitis lethargica
People may also have unusual eye movements, upper body weakness, muscle pain, tremors, neck stiffness, and behavior changes including psychosis. A worldwide epidemic occurred from 1917 to 1928, with more than one million reported cases. Since then only occasional cases have been reported. Levodopa and other antiparkinson drugs may help some symptoms.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever and headache
- Double vision
- Extreme tiredness (lethargy)
- Parkinson-like symptoms
- Tremor
- Sleep disturbance
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 and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Epilepsy Foundation and Parkinson & Movement Disorder Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation, Parkinson & Movement Disorder Alliance
- 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 Epilepsy Foundation 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 cause is unknown, but a viral origin is suspected.
Also known as: epidemic encephalitis; lethargic encephalitis; von economo disease; von economo encephalitis; von economo's disease; von economo's encephalitis
Patient organizations
- Epilepsy FoundationEpilepsy · United States
- Parkinson & Movement Disorder AllianceParkinsonism · United States
You are more than your diagnosis
Perspectives from people navigating life with Encephalitis lethargica.
Explore research for Encephalitis lethargica
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- 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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