Living with Dilated cardiomyopathy 1A
A rare inherited heart muscle condition with an enlarged heart and rhythm problems, usually starting in adulthood.
Understanding Dilated cardiomyopathy 1A
It is often preceded or accompanied by problems with the heart's electrical system and irregular heartbeats. It usually begins in early to mid-adulthood. In some people it is linked with skeletal muscle disease.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Stretched, thinned heart muscle (dilated cardiomyopathy)
- Heart rhythm problems
- Irregular heartbeat (atrial fibrillation)
- Fainting spells
- Weak left ventricle pumping
- Loss of body fat (lipodystrophy)
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.
- 3Consider genetic testing
Changes in LMNA 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
LMNA Cardiac Diseases Network 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: LMNA Cardiac Diseases Network, 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 LMNA Cardiac Diseases Network 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
Changes in the LMNA gene cause this condition. It is autosomal dominant, so a changed copy of the gene from one parent can be enough.
Also known as: cardiomyopathy dilated with conduction defect type 1; cardiomyopathy, congestive; cardiomyopathy, dilated, type 1a; cardiomyopathy, dilated, with conduction defect 1; cdcd1; cmd1a
Patient organizations
- LMNA Cardiac Diseases NetworkDilated cardiomyopathy 1A · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Dilated cardiomyopathy 1A.
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