Living with Progressive rubella panencephalitis
A rare brain inflammation that develops years after rubella infection and slowly affects thinking and movement.
Understanding Progressive rubella panencephalitis
It can appear up to several years after rubella infection present from birth, or after rubella in childhood. Symptoms slowly worsen and affect many parts of the nervous system. GARD lists onset in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD describes these features:
- Decline in thinking skills (cognitive decline)
- Poor balance and coordination (cerebellar ataxia)
- Stiff, tight muscles (spasticity)
- Seizures
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
GARD says it develops after a rubella virus infection, either one a baby is born with (congenital) or one in childhood.
Also known as: rubella panencephalitis
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 Progressive rubella panencephalitis.
Explore research for Progressive rubella panencephalitis
Explore actively recruiting Progressive rubella panencephalitis studies with HealthSpark.
Find actively recruiting studies for Progressive rubella panencephalitis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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