Living with Symptomatic form of muscular dystrophy of Duchenne and Becker in female carriers
A genetic muscle condition in some female carriers of Duchenne or Becker gene changes, with muscle weakness and sometimes heart changes.
Understanding Symptomatic form of muscular dystrophy of Duchenne and Becker in female carriers
People have varying degrees of muscle weakness from a slowly worsening muscle disease. Some also have heart muscle changes, such as an enlarged left lower heart chamber (dilated cardiomyopathy). Signs usually begin in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weakness in upper arm and upper leg muscles
- Inward curve of the lower back
- Shoulder muscle weakness
- Muscle cramps with exercise
- Stiff elbows
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, 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
Children's Cardiomyopathy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Expert lists: Children's Cardiomyopathy 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 Children's Cardiomyopathy Foundation
- 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
Changes in the DMD gene cause this condition. It is X-linked, meaning the gene is on the X chromosome.
Also known as: symptomatic form of muscular dystrophy of duchenne and becker in female carrier
Patient organizations
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Symptomatic form of muscular dystrophy of Duchenne and Becker in female carriers.
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