Living with Familial sick sinus syndrome
A rare inherited heart rhythm condition, usually in older adults, where the heart's electrical system does not set the rate properly.
Understanding Familial sick sinus syndrome
It leads to problems with heart rate, such as a slow heartbeat (bradycardia) or pauses in the heartbeat. It usually affects older people. People with it are at higher risk of atrial fibrillation, an irregular heartbeat, and other heart-related complications.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Fainting
- Dizziness
- Heart palpitations
- Tiredness (fatigue)
- Slow heart rate (bradycardia)
- Pauses in the 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
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
Changes in genes cause it. It can be passed down in an autosomal dominant or autosomal recessive way. GARD doesn't name a gene.
Also known as: familial sinus node dysfunction; hereditary sick sinus 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 Familial sick sinus syndrome.
Explore research for Familial sick sinus syndrome
Explore actively recruiting Familial sick sinus syndrome studies with HealthSpark.
Find actively recruiting studies for Familial sick sinus syndrome 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 Familial sick sinus syndrome 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 Familial sick sinus syndrome
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 Familial sick sinus syndrome 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.