Living with Distal myopathy, Tateyama type
A genetic muscle condition that weakens the small muscles of the hands and feet, usually noticed in adulthood.
Understanding Distal myopathy, Tateyama type
This is one form of distal myopathy, which affects muscles farthest from the center of the body. The small muscles of the hands and feet shrink and weaken, usually becoming noticeable in adulthood. A bump on a muscle, especially in the forearm, can cause it to tense repeatedly, which can be painful. Calf muscles may be enlarged. Muscles closer to the center, like the thighs and upper arms, are normal.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slowly worsening weakness in muscles of hands and feet
- Shrinking small muscles of the hands
- Enlarged-looking calf muscles
- High arches in the feet (pes cavus)
- Tensing of a muscle after a bump (percussion-induced)
- Clumsiness
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.
- 3Consider genetic testing
Changes in CAV3 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
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: 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 Muscular Dystrophy Association
- 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 the CAV3 gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: cav3-related distal myopathy; caveolin 3 related distal myopathy; mpdt
Patient organizations
- Muscular Dystrophy AssociationDistal myopathy, Tateyama type · United States
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