Living with Left ventricular noncompaction
A heart muscle condition in which part of the main pumping chamber has a thick, spongy texture.
Understanding Left ventricular noncompaction
The heart muscle is thick and spongy instead of smooth and firm, which can make it weaker at pumping blood. Some people have no symptoms, while others have heart problems. It can be diagnosed at any age, from birth to late adulthood.
Signs & symptoms
Symptoms vary from person to person, and some people have none. GARD lists these:
- Irregular heartbeat (arrhythmia)
- Fluttering or pounding in the chest (palpitations)
- Very tired during exercise
- Shortness of breath
- Fainting (syncope)
- Abnormal blood clots
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
Hypertrophic Cardiomyopathy Association and 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: Hypertrophic Cardiomyopathy Association, 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 Hypertrophic Cardiomyopathy Association 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
It is caused by changes in genes. It can be inherited in an autosomal dominant, autosomal recessive, or X-linked way.
Also known as: left ventricular hypertrabeculation; left ventricular non-compaction cardiomyopathy; left ventricular non-compaction syndrome; left ventricular noncompaction (disease); lv non-compaction syndrome; lvnc
Patient organizations
- Hypertrophic Cardiomyopathy AssociationLeft ventricular noncompaction · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Left ventricular noncompaction.
Explore research for Left ventricular noncompaction
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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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