Living with Familial acute necrotizing encephalopathy
An inherited tendency to sudden brain illness after a viral infection like the flu.
Understanding Familial acute necrotizing encephalopathy
Brain changes develop within days after a viral illness such as influenza. It starts within 12 hours to 3 or 4 days of the first symptoms, which are fever, cough, vomiting, and diarrhea. Then nervous system problems follow. Most people go into a coma that lasts several weeks. The illness is called acute because episodes are time-limited.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever
- Sudden brain illness (acute encephalopathy)
- Coma
- Seizures or hallucinations
- Poor balance and coordination (ataxia)
- Muscle stiffness and weakness
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 RANBP2 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 RANBP2 gene cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: adane; encephalopathy, acute, infection-induced, 3, susceptibility to; encephalopathy, acute, infection-induced, susceptibility to, 3; encephalopathy, acute, infection-induced, susceptibility to, type 3; iiae3; recurrent acute necrotizing encephalopathy
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 Familial acute necrotizing encephalopathy.
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