Living with Progressive familial heart block
A genetic condition that changes the heart's electrical signals, so the heartbeat can be slow or uneven.
Understanding Progressive familial heart block
In heart block, the electrical signals that coordinate the heartbeat are partly or fully blocked between the upper and lower chambers. Early on the block is partial. Over time it can become complete. This can cause a slow or irregular heartbeat, and GARD lists onset in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow or irregular heartbeat (arrhythmia)
- Shortness of breath (dyspnea)
- Fainting (syncope)
- Dizziness
- A fluttering or pounding feeling in the chest (palpitations)
- Heart failure
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.
Care & treatment
- Care team
- Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
GARD lists autosomal dominant inheritance, meaning one changed copy of a gene from a parent is enough to cause it. It doesn't name a gene here.
Also known as: familial lenegre disease; familial lenègre disease; familial lev disease; familial lev-lenegre disease; familial lev-lenègre disease; familial pccd
Patient organizations
Rare-disease groups that can help
- 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 Progressive familial heart block.
Explore research for Progressive familial heart block
Explore actively recruiting Progressive familial heart block studies with HealthSpark.
Find actively recruiting studies for Progressive familial heart block with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Progressive familial heart block studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Progressive familial heart block
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Progressive familial heart block experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.