Living with Hereditary motor and sensory neuropathy with acrodystrophy
A rare inherited nerve condition with limb weakness, loss of feeling, and skin and bone changes in the hands and feet.
Understanding Hereditary motor and sensory neuropathy with acrodystrophy
It causes weakness in the limbs and a severe loss of feeling in the hands and feet. Skin and bone changes at the ends of the limbs can lead to painless sores that do not heal, bone infection (osteomyelitis), stiff joints, and loss of the tips of the fingers or toes.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on the summary, it can include:
- Weakness in the limbs
- Severe loss of feeling in the hands and feet
- Painless sores that do not heal
- Bone infection (osteomyelitis)
- Stiff joints (contractures)
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
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: 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 Charcot-Marie-Tooth Association 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 is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: ar-cmt2 with acrodystrophy; autosomal recessive axonal charcot-marie-tooth disease with acrodystrophy; autosomal recessive charcot-marie-tooth type 2 with acrodystrophy; hmsn with acrodystrophy
Patient organizations
- Charcot-Marie-Tooth AssociationHereditary motor and sensory neuropathy with acrodystrophy · 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 acrodystrophy.
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