Living with Charcot-Marie-Tooth disease
A group of inherited conditions that damage nerves in the feet, legs, and hands, causing weakness and loss of feeling.
Understanding Charcot-Marie-Tooth disease
Peripheral nerves link the brain and spinal cord to muscles and to cells that sense touch, pain, heat, and sound. As the damage worsens, people may lose sensation and have wasting of muscles in the feet, legs, and hands. It often shows up in the teen years or early adulthood, but can start anytime from early childhood on.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition. Its summary describes these features:
- Changes or loss of sensation
- Muscle wasting in the feet, legs, and hands
- Muscle weakness that worsens over time
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 cause this condition. It can be inherited in autosomal dominant, autosomal recessive, or X-linked ways.
Also known as: charcot marie tooth muscular atrophy; charcot-marie-tooth disease/hereditary motor and sensory neuropathy; charcot-marie-tooth hereditary neuropathy; charcot-marie-tooth neuropathy; cmt; cmt - charcot-marie-tooth disease
Patient organizations
- Hereditary Neuropathy Foundation Inc.Charcot-Marie-Tooth disease · United States
- Charcot-Marie-Tooth AssociationCharcot-Marie-Tooth disease · United States
- Muscular Dystrophy AssociationCharcot-Marie-Tooth disease · United States
- Ben's FriendsCharcot-Marie-Tooth disease · United States
- CMT Research FoundationCharcot-Marie-Tooth disease · 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 Charcot-Marie-Tooth disease.
Explore research for Charcot-Marie-Tooth disease
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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