Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome

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ORPHA:466794OMIM:616719G11.0
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Overview

Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome is an extremely rare genetic condition that affects multiple body systems, primarily the liver, brain, and nerves. The disease typically begins in infancy with a sudden episode of acute liver failure, which means the liver stops working properly and cannot perform its vital functions such as filtering toxins and producing important proteins. Children who survive this initial liver crisis may go on to develop cerebellar ataxia, which causes problems with balance, coordination, and walking due to damage to the cerebellum (the part of the brain that controls movement). Additionally, affected individuals develop peripheral sensorimotor neuropathy, meaning the nerves that carry signals between the brain and the arms and legs become damaged, leading to numbness, tingling, weakness, and difficulty with fine motor skills. This condition is caused by mutations in the SCYL1 gene and follows an autosomal recessive inheritance pattern, meaning a child must inherit a faulty copy of the gene from each parent. Because this disease is so rare, treatment options are currently limited to managing symptoms and providing supportive care. There is no cure at this time, and management focuses on addressing liver problems, supporting neurological function, and maintaining quality of life through rehabilitation therapies.

Also known as:

Key symptoms:

Sudden liver failure in infancyYellowing of the skin and eyes (jaundice)Poor balance and coordination (ataxia)Difficulty walkingNumbness or tingling in hands and feetMuscle weakness in arms and legsDifficulty with fine motor skillsLow muscle toneRecurrent episodes of liver problemsGrowth delaysDifficulty with speechFatigue and low energyAbnormal eye movementsWasting of muscles over time

Clinical phenotype terms (25)— hover any for plain English
Dysmetric saccadesHP:0000641Saccadic smooth pursuit interruptionsHP:0001152Acute hepatic failureHP:0006554Generalized limb muscle atrophyHP:0009055StutteringHP:0025268
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome.

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No actively recruiting trials found for Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome at this time.

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No specialists are currently listed for Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome.

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Community

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Caregiver Resources

NORD Caregiver Resources

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Social Security Disability

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Questions for your doctor

Bring these to your next appointment

  • Q1.How severe is my child's liver involvement, and what are the warning signs of another liver crisis?,What is the expected pace of neurological progression in my child's case?,Should we consider liver transplantation, and if so, when would that be appropriate?,What therapies (physical, occupational, speech) should we start now to help maintain function?,Are there any clinical trials or research studies my child might be eligible for?,Should other family members be tested for carrier status of the SCYL1 mutation?,What emergency plan should we have in place at home and at school?

Common questions about Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome

What is Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome?

Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome is an extremely rare genetic condition that affects multiple body systems, primarily the liver, brain, and nerves. The disease typically begins in infancy with a sudden episode of acute liver failure, which means the liver stops working properly and cannot perform its vital functions such as filtering toxins and producing important proteins. Children who survive this initial liver crisis may go on to develop cerebellar ataxia, which causes problems with balance, coordination, and walking due to damage

How is Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome inherited?

Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome typically begin?

Typical onset of Acute infantile liver failure-cerebellar ataxia-peripheral sensory motor neuropathy syndrome is infantile. Age of onset can vary across affected individuals.