Living with Limb-girdle muscular dystrophy
A group of inherited muscle diseases that weaken the muscles of the shoulders, upper arms, hips, and thighs.
Understanding Limb-girdle muscular dystrophy
The muscles closest to the center of the body are most affected, especially the shoulders, upper arms, hips, and thighs. Symptoms may appear as early as childhood and typically worsen over time. Severity and age of onset vary, even within a family.
Signs & symptoms
Symptoms vary from person to person. GARD describes these early signs:
- Muscle weakness in shoulders, upper arms, hips, thighs
- Muscle wasting
- Waddling walk or walking on the balls of the feet
- Enlarged calf muscles
- Trouble running
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
Muscular Dystrophy Association and The Speak Foundation 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, The Speak Foundation
- 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 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
It is caused by changes in genes. It can be inherited in an autosomal dominant or autosomal recessive way, depending on the type.
Also known as: erb's muscular dystrophy; leyden-mbius muscular dystrophy; leyden-mobius muscular dystrophy; lgmd; limb girdle muscular dystrophy; muscular dystrophies, limb-girdle
Patient organizations
- Muscular Dystrophy AssociationLimb-girdle muscular dystrophy · United States
- The Speak FoundationLimb-girdle muscular dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Limb-girdle muscular dystrophy.
Explore research for Limb-girdle muscular dystrophy
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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