Living with Progressive familial heart block, type 1A
An inherited heart condition that affects the heart's electrical system and can slow the heartbeat.
Understanding Progressive familial heart block, type 1A
It is a bundle branch disorder, which means the electrical signals that run through the heart don't travel normally. This can slow the heartbeat. It is diagnosed with an electrocardiogram (ECG), which shows changes in the heart's electrical activity.
Signs & symptoms
Symptoms vary from person to person. GARD describes these features:
- Shortness of breath (dyspnea)
- Fainting (syncopal episodes)
- Slow heartbeat
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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
This condition is caused by changes in the SCN5A gene. It is autosomal dominant, meaning one changed copy of the gene from a parent is enough.
Also known as: cardiac conduction defect progressive; heart block progressive familial type 1; heart block, progressive familial, type i; heart block, progressive, type ia; hereditary bundle branch system defect; lenegre syndrome
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, type 1A.
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