Living with Familial restrictive cardiomyopathy
An inherited heart muscle condition in which the heart is too stiff to relax fully between beats.
Understanding Familial restrictive cardiomyopathy
Blood backs up in the upper chambers and lungs, so the lower chambers get less blood. It can appear anytime from childhood to adulthood. Some children have no obvious signs.
Signs & symptoms
Symptoms differ by age. GARD says children may have:
- Poor weight gain and growth (failure to thrive)
- Extreme tiredness (fatigue)
- Fainting
- Swelling (edema)
- Enlarged liver
- Shortness of breath in adults
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
Changes in genes cause it. GARD doesn't name a gene or describe how it is inherited.
Also known as: childhood restrictive cardiomyopathy; hereditary restrictive cardiomyopathy; rcm
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 Familial restrictive cardiomyopathy.
Explore research for Familial restrictive cardiomyopathy
Explore actively recruiting Familial restrictive cardiomyopathy studies with HealthSpark.
Find actively recruiting studies for Familial restrictive cardiomyopathy with HealthSpark. Share your city to explore research near you.
- 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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