Living with Muscular dystrophy
A group of more than 30 inherited conditions that cause muscle weakness that slowly gets worse.
Understanding Muscular dystrophy
The muscles slowly weaken and break down. Some forms start in newborns, infants, or children. Others start later and may not appear until middle age or beyond. Forms differ in which muscles are affected, age at onset, how quickly they progress, and how they are inherited. Some forms also affect the heart muscle.
Signs & symptoms
GARD doesn't list specific symptoms for this group yet. Weakness of the muscles used for movement is the main feature.
- Muscle weakness that gets worse over time
- Breakdown of muscles used for movement
- Heart muscle involvement in some forms
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 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 genes cause muscular dystrophy. Inheritance patterns differ between forms.
Also known as: md - muscular dystrophy; muscle biopsy shows dystrophic changes; pmd - progressive muscular dystrophy
Patient organizations
- Muscular Dystrophy AssociationMuscular dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Muscular dystrophy.
Explore research for Muscular dystrophy
Explore actively recruiting Muscular dystrophy studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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