Living with Charcot-Marie-Tooth disease, type I
A group of inherited nerve conditions that slowly cause weakness and loss of feeling in the hands and feet.
Understanding Charcot-Marie-Tooth disease, type I
It is usually slowly worsening. Signs include weakness and wasting in the muscles farthest from the center of the body, loss of feeling, and slow nerve signals. High foot arches and foot drop on both sides are often seen. It can start at a variety of ages.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition. Its summary describes these features:
- Weakness in the hands and feet
- Muscle wasting
- Loss of feeling
- High foot arches (pes cavus)
- Foot drop in both feet
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 is inherited in an autosomal dominant way, so one changed copy of a gene can cause it.
Also known as: autosomal dominant demyelinating charcot-marie-tooth disease; charcot marie tooth disease, type 1; charcot-marie-tooth disease of demyelinating type; charcot-marie-tooth disease type 1; charcot-marie-tooth neuropathy type 1; charcot-marie-tooth, type 1
Patient organizations
- Hereditary Neuropathy Foundation Inc.Charcot-Marie-Tooth disease, type I · United States
- Charcot-Marie-Tooth AssociationCharcot-Marie-Tooth disease, type I · United States
- Muscular Dystrophy AssociationCharcot-Marie-Tooth disease, type I · United States
- CMT Research FoundationCharcot-Marie-Tooth disease, type I · 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, type I.
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