Living with Histiocytoid cardiomyopathy
A rare heart condition starting in infancy, with an enlarged heart and fast heart rhythms.
Understanding Histiocytoid cardiomyopathy
It causes an enlarged heart (cardiomegaly) and severe rhythm problems (arrhythmias). Cells that look like histiocytes are found in the heart muscle. It is usually seen in newborns and infants. GARD lists several possible inheritance patterns.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fast heart rate (tachycardia)
- Fast rhythm from the upper heart (supraventricular tachycardia)
- Fast rhythm from the lower heart (ventricular tachycardia)
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, United Mitochondrial Disease Foundation and MitoAction 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, United Mitochondrial Disease Foundation, MitoAction
- 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 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 genes (also called variants) cause this condition. GARD lists autosomal recessive, X-linked, and mitochondrial inheritance.
Also known as: arachnocytosis of the myocardium; congenital cardiomyopathy; foamy myocardial transformation; foamy myocardial transformation of infancy; focal lipid cardiomyopathy; infantile cardiomyopathy with histiocytoid change
Patient organizations
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
- United Mitochondrial Disease FoundationMitochondrial diseases · United States
- MitoActionMitochondrial diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Histiocytoid cardiomyopathy.
Explore research for Histiocytoid cardiomyopathy
Explore actively recruiting Histiocytoid cardiomyopathy studies with HealthSpark.
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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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