Living with Primary dilated cardiomyopathy
A heart muscle disease in which the main pumping chamber enlarges and pumps with less force.
Understanding Primary dilated cardiomyopathy
It is the most common type of cardiomyopathy. The left ventricle becomes enlarged and cannot pump blood with as much force. The heart muscle has trouble contracting, which can lead to irregular heartbeats and blood clots. Over time the heart can weaken and heart failure can occur. It can begin at any time in life.
Signs & symptoms
GARD doesn't list a symptom list for this condition. It describes these effects:
- Enlarged left pumping chamber
- Weaker heart pumping
- Irregular heartbeats (arrhythmia)
- Blood clots
- 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 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
- 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 Team Titin 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
The cause is often unknown. Some cases are acquired and about half are inherited or familial. Familial DCM is most often autosomal dominant and is caused by changes in several genes, most commonly TTN (about 20% of cases).
Also known as: cardiomyopathy, dilated; ccm - congestive cardiomyopathy; cocm - congestive cardiomyopathy; congestive cardiomyopathy; congestive dilated cardiomyopathy; dcm
Patient organizations
- Team TitinPrimary dilated cardiomyopathy · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary dilated cardiomyopathy.
Explore research for Primary dilated cardiomyopathy
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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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