Living with Duchenne muscular dystrophy
A genetic condition, mostly in males, that causes muscle weakness and loss that slowly worsen, usually noticed in early childhood.
Understanding Duchenne muscular dystrophy
DMD occurs mainly in males, though rarely it can affect females. It causes progressive weakness and loss of both skeletal and heart muscle. Early signs can include delays in sitting, standing, or walking and trouble learning to speak. Weakness is usually noticeable in early childhood. It can occur in people with no family history. Becker muscular dystrophy is a milder form linked to the same gene.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Muscle weakness that slowly gets worse
- Weakness in upper arms and upper legs
- Waddling walk
- Enlarged calf muscles
- Heart muscle disease (cardiomyopathy)
- Scoliosis (curved spine)
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, eye disease specialists, genetic specialists and heart and blood vessel specialists.
- 3Consider genetic testing
Changes in DMD 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
Parent Project Muscular Dystrophy, Hypertrophic Cardiomyopathy Association and Muscular Dystrophy Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Expert lists: Parent Project Muscular Dystrophy, Hypertrophic Cardiomyopathy 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 Parent Project Muscular Dystrophy 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 the DMD gene cause this condition. It is inherited in an X-linked recessive pattern and can occur in people with no family history.
Also known as: dmd; dmd - duchenne muscular dystrophy; duchenne muscular dystrophy, x-linked recessive; muscular dystrophy, duchenne; muscular dystrophy, pseudohypertrophic progressive, duchenne type; pseudohypertrophic muscular dystrophy
Patient organizations
- Parent Project Muscular DystrophyDuchenne muscular dystrophy · United States
- Hypertrophic Cardiomyopathy AssociationDuchenne muscular dystrophy · United States
- Muscular Dystrophy AssociationDuchenne muscular dystrophy · United States
- Charley's Fund, Inc.Duchenne muscular dystrophy · United States
- Coalition DuchenneDuchenne muscular dystrophy · United States
- CureDuchenneDuchenne muscular dystrophy · United States
- Jett FoundationDuchenne muscular dystrophy · United States
- Little Hercules FoundationDuchenne muscular dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Duchenne muscular dystrophy.
Explore research for Duchenne muscular dystrophy
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