Living with Infantile liver failure syndrome 2
A rare genetic disorder with episodes of sudden liver failure during fevers in infants and young children.
Understanding Infantile liver failure syndrome 2
People usually recover completely between episodes with conservative treatment. GARD says it is not contagious and cannot be caught from someone else.
Signs & symptoms
GARD doesn't list common symptoms for this condition yet. Less common ones include:
- Sudden liver failure during fever illnesses
- Liver-related brain problems (hepatic encephalopathy)
- Seizures
- Heart muscle disease
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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
GARD says it is caused by a recessive gene, which means a child inherits a changed copy of the gene from each parent.
Also known as: ilfs2; infantile liver failure caused by mutation in nbas; infantile liver failure syndrome type 2; nbas infantile liver failure
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 Infantile liver failure syndrome 2.
Explore research for Infantile liver failure syndrome 2
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- Eligibility is confirmed by the study team
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