Living with Subacute sclerosing panencephalitis
A rare brain condition that can appear years after a measles infection, with behavior changes and loss of movement skills.
Understanding Subacute sclerosing panencephalitis
People may first have behavior changes, memory and thinking decline (dementia), and problems with movement. It is unclear why some people develop it after seeming to recover from measles while others do not. It can occur at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Behavior changes and irritability
- Memory and thinking decline (dementia)
- Muscle jerks (myoclonus)
- Trouble walking
- Loss of speech
- Hallucinations or depression
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 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
- 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
- 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
It is caused by a measles infection acquired earlier in life. GARD says it is unclear why only some people develop it.
Also known as: dawson encephalitis; dawson's encephalitis; dawson's inclusion body encephalitis; immunosuppressive measles encephalitis; measles inclusion body encephalitis; mibe - measles inclusion body encephalitis
Patient organizations
- Epilepsy FoundationEpilepsy · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Subacute sclerosing panencephalitis.
Explore research for Subacute sclerosing panencephalitis
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