Living with Fatal post-viral neurodegenerative disorder
A rare brain inflammation condition in children triggered by viral infections, causing balance and speech problems and loss of skills.
Understanding Fatal post-viral neurodegenerative disorder
It begins with poor coordination (ataxia), slurred speech (dysarthria), and changes in the brain's white matter. Episodes of worsening can include loss of movement and speech skills, muscle weakness, and further white matter damage. It is listed as starting in childhood.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Poor coordination and balance (ataxia)
- Slurred speech (dysarthria)
- Loss of movement and speech skills
- Muscle weakness
- White matter changes in the brain
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 genetic specialists.
- 3Consider genetic testing
Changes in PRF1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
Changes in the PRF1 gene cause it. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent. Viral infection triggers symptoms.
Patient organizations
Rare-disease groups that can help
- 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 Fatal post-viral neurodegenerative disorder.
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- Eligibility is confirmed by the study team
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