Living with Progressive familial heart block type IB
An inherited heart condition that can make the heart beat too slowly or skip beats.
Understanding Progressive familial heart block type IB
It can cause the heart to beat too slowly or skip beats. GARD lists autosomal dominant inheritance. It doesn't give an age of onset.
Signs & symptoms
Symptoms vary from person to person. GARD lists these, though it doesn't say how common they are:
- Heart beating too slowly or skipping beats
- Fainting spells
- Block of signals on the right side of the heart (right bundle branch block)
- Blocked signals between the upper and lower heart chambers
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 a change in the TRPM4 gene. It is autosomal dominant, meaning one changed copy of the gene from a parent is enough.
Also known as: pfhb1b; progressive familial heart block caused by mutation in trpm4; progressive familial heart block, type ib; trpm4 progressive familial heart block
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 IB.
Explore research for Progressive familial heart block type IB
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- Eligibility is confirmed by the study team
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