Living with Hereditary motor and sensory neuropathy with optic atrophy
A rare inherited nerve condition affecting the feet and legs, with vision loss from optic nerve damage.
Understanding Hereditary motor and sensory neuropathy with optic atrophy
Nerve damage mainly affects the lower legs and feet and varies in severity. Optic atrophy (damage to the nerve of the eye) gets worse over time and often leads to vision loss. People may have weak muscles in the lower limbs, foot differences, poor sight, and rapid eye movements. Some also have hearing loss, stiff joints, scoliosis, or loss of smell.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on the summary, it can include:
- Weakness and wasting in the lower legs and feet
- Absent or low reflexes
- Optic nerve damage with vision loss
- Poor night and side vision
- Foot differences
- Hearing loss
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 Muscular Dystrophy Association 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, Muscular Dystrophy Association
- 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
GARD says changes in genes (also called variants) cause this condition. It can be autosomal dominant or autosomal recessive.
Also known as: charcot-marie-tooth disease type 6; charcot-marie-tooth disease, type 6; cmt6; hereditary motor and sensory neuropathy type 6; hereditary motor and sensory neuropathy type vi; hereditary motor and sensory neuropathy vi
Patient organizations
- Hereditary Neuropathy Foundation Inc.Hereditary motor and sensory neuropathy with optic atrophy · United States
- Charcot-Marie-Tooth AssociationHereditary motor and sensory neuropathy with optic atrophy · United States
- Muscular Dystrophy AssociationHereditary motor and sensory neuropathy with optic atrophy · 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 Hereditary motor and sensory neuropathy with optic atrophy.
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