Living with Roussy-Lévy syndrome
A rare inherited nerve condition starting in infancy or childhood with unsteady walking, foot differences, and weakness in the hands and feet.
Understanding Roussy-Lévy syndrome
Symptoms start in infancy or childhood. They include unsteady walking, high-arched feet, missing reflexes, weakness in the arms and legs, hand tremor, and loss of feeling in hands and feet. Muscles waste over time and the spine may curve.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Unsteady walking (gait ataxia)
- High-arched feet (pes cavus)
- Missing tendon reflexes
- Weakness and wasting of the hands and feet
- Reduced pain, temperature, and vibration sense
- Curved spine (kyphoscoliosis)
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Hereditary Neuropathy Foundation Inc., Charcot-Marie-Tooth Association and The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Hereditary Neuropathy Foundation Inc., Charcot-Marie-Tooth Association, The Foundation for Peripheral Neuropathy
- 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 Hereditary Neuropathy Foundation Inc. and other patient organizations
- 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
It is caused by changes in a gene and is autosomal dominant, so one changed copy of the gene can be enough. GARD does not name a gene in this record.
Also known as: hereditary areflexic dystasia; hereditary areflexic dystasia, roussy-levy type; hereditary areflexic dystasia, roussy-lévy type; hereditary ataxia-muscular atrophy syndrome; roussy levy hereditary areflexic dystasia; roussy levy syndrome
Patient organizations
- Hereditary Neuropathy Foundation Inc.Roussy-Lévy syndrome · United States
- Charcot-Marie-Tooth AssociationRoussy-Lévy syndrome · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Roussy-Lévy syndrome.
Explore research for Roussy-Lévy syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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