Living with Primary familial dilated cardiomyopathy
An inherited heart muscle disease in which the heart becomes thin and enlarged and pumps less well, with no other cause or body-wide signs.
Understanding Primary familial dilated cardiomyopathy
The enlargement typically starts in the lower left chamber and makes it harder for the heart to pump blood. It is called nonsyndromic when it has no other cause and does not affect other parts of the body. Signs usually begin in mid-adulthood but can occur from infancy to late adulthood. They vary, even within a family.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Fluttering or pounding in the chest (palpitations)
- Shortness of breath, especially lying down or active
- Tiredness (fatigue)
- Swelling of the legs and feet
- Dizziness or fainting
- Abnormal heart rhythms and heart failure over time
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 genetic specialists and heart and blood vessel specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Children's Cardiomyopathy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- 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
GARD says changes in genes cause this condition but doesn't name a gene in this record.
Also known as: familial dilated cardiomyopathy; fdc; hereditary dilated cardiomyopathy; hypokinetic dilated cardiomyopathy, familial
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 Primary familial dilated cardiomyopathy.
Explore research for Primary familial dilated cardiomyopathy
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