Living with Neuronopathy, distal hereditary motor, autosomal dominant 1
A rare inherited nerve and muscle condition with slowly worsening weakness in the lower legs, without loss of feeling.
Understanding Neuronopathy, distal hereditary motor, autosomal dominant 1
It causes slowly worsening weakness and wasting of the muscles in the lower legs, without loss of sensation. Other features may include high-arched feet, hammertoes, and increased muscle tone. GARD lists onset from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weakness in the muscles farthest from the center of the body
- Wasting of muscles in the hands and feet
- Arm weakness
- High-arched feet (pes cavus)
- Hammertoes
- Increased muscle tone
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
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: 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 The Foundation for Peripheral Neuropathy 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 cause this condition. It is autosomal dominant, which means one changed copy of a gene can be enough to cause it.
Also known as: autosomal dominant distal juvenile spinal muscular atrophy type 1; charcot-marie-tooth disease, spinal, i; dhmn1; distal hereditary motor neuronopathy type i; distal hereditary motor neuropathy type 1; hmn i
Patient organizations
- 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 Neuronopathy, distal hereditary motor, autosomal dominant 1.
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