Living with MYH7-related skeletal myopathy
An inherited muscle condition (Laing distal myopathy) that starts with weakness in the feet and ankles in childhood.
Understanding MYH7-related skeletal myopathy
The first sign is usually weakness in the feet and ankles. This can cause a tight Achilles tendon, trouble lifting the big toe, and a high-stepping walk. Months to years later, weakness appears in the hands and wrists, and some people have hand tremors. Neck and face muscles can be weak. Years later, mild weakness can spread to the legs, hips, and shoulders. It progresses very gradually, and most people remain mobile.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Muscle weakness that slowly gets worse
- Foot drop
- High-stepping walk
- Weakness in the neck muscles
- Weakness in hands and fingers
- Muscle aches
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 MYH7 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 lists changes in the MYH7 gene. The condition is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: distal myopathy type 1; gowers disease; laing distal myopathy; laing early-onset distal myopathy; mpd1; myopathy distal, type 1
Patient organizations
- Muscular Dystrophy AssociationMYH7-related skeletal myopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with MYH7-related skeletal myopathy.
Explore research for MYH7-related skeletal myopathy
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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