Living with Long QT syndrome
A heart rhythm condition that can cause fainting, often passed down in families.
Understanding Long QT syndrome
The inherited forms are caused by changes in genes for heart ion channel proteins. The two major forms are Romano-Ward syndrome (long QT syndrome 1) and Jervell and Lange-Nielsen syndrome.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes these features:
- Fainting episodes (syncope)
- Abnormal fast heart rhythms (ventricular arrhythmia)
- Long QT interval on an 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
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.
- 4Connect with expert centers
SADS Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: SADS Foundation
- 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 SADS Foundation
- 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
The inherited forms are caused by changes in genes that make heart ion channel proteins. GARD names two major forms, Romano-Ward and Jervell and Lange-Nielsen syndromes.
Also known as: long q-t syndrome; lqt; lqts; prolonged q-t interval syndrome; ventricular arrhythmia associated with long qt syndrome
Patient organizations
- SADS FoundationLong QT syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Long QT syndrome.
Explore research for Long QT syndrome
Explore actively recruiting Long QT syndrome studies with HealthSpark.
Find actively recruiting studies for 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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