Living with Infantile liver failure
A rare genetic liver condition with episodes of sudden liver failure brought on by fevers, with recovery in between.
Understanding Infantile liver failure
It begins in infancy or early childhood. During episodes, people may have vomiting, sleepiness (lethargy), yellow skin (jaundice), high liver enzymes, and clotting problems. There is usually full recovery between episodes with conservative treatment.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these during episodes:
- Vomiting
- Sleepiness (lethargy)
- Yellow skin and eyes (jaundice)
- High liver enzymes
- Blood clotting problems
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 digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); 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
GARD says it is inherited in an autosomal recessive pattern, meaning a child inherits a changed copy of the gene from each parent. Episodes are brought on by a fever illness.
Also known as: fever-associated acute infantile liver failure syndrome; infantile liver failure syndrome; liver failure, infantile
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.
Explore research for Infantile liver failure
Explore actively recruiting Infantile liver failure studies with HealthSpark.
Find actively recruiting studies for Infantile liver failure 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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