Living with Congenital long QT syndrome
A heart rhythm condition in which the heart takes longer than usual to recharge between beats.
Understanding Congenital long QT syndrome
The long recharge time shows up on a heart test called an ECG (EKG) as a long QT interval. It can lead to abnormal heart rhythms (arrhythmia), fainting, or cardiac arrest. Some people with it never have any health problems. GARD describes fifteen types, based on genetic cause. Romano-Ward syndrome covers the types that involve only the long QT interval.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary mentions fainting (syncope) and abnormal heart rhythms, and some people have no problems at all.
- Fainting (syncope)
- Abnormal heart rhythm (arrhythmia)
- Long QT interval on a heart test (ECG)
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 says changes in genes cause this condition, and the type is defined by which gene is involved. It can be inherited in an autosomal dominant way (one changed copy is enough) or an autosomal recessive way (a changed copy from each parent).
Also known as: familial long qt syndrome; hereditary long qt syndrome; inherited long qt syndrome; lqts; romano-ward long qt syndrome; romano-ward 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 Congenital long QT syndrome.
Explore research for Congenital long QT syndrome
Explore actively recruiting Congenital long QT syndrome studies with HealthSpark.
Find actively recruiting studies for Congenital long QT 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 Congenital long QT 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 Congenital long QT 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 Congenital long QT 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.