Living with Long QT syndrome 3
A rare heart rhythm disease that affects the heart's electrical system and can cause fainting spells.
Understanding Long QT syndrome 3
It shows as a long QT interval and abnormal T-waves on an ECG. You may have episodes of very fast, abnormal heartbeats that start and stop on their own and cause fainting. They usually happen during exercise or strong emotions, less often during sleep, and sometimes come without warning. About half of people with a disease-causing gene change have symptoms.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Torsade de pointes (a fast, abnormal heart rhythm)
- Ventricular tachycardia
- Ventricular flutter
- Fluid buildup in a baby before birth (hydrops fetalis)
- Fainting spells
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
It is caused by a disease-causing change in one of the long QT syndrome genes. It is inherited in an autosomal dominant way.
Also known as: long qt syndrome caused by mutation in scn5a; long qt syndrome type 3; lqt3; scn5a long qt syndrome; scn5a-related 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 Long QT syndrome 3.
Explore research for Long QT syndrome 3
Explore actively recruiting Long QT syndrome 3 studies with HealthSpark.
Find actively recruiting studies for Long QT syndrome 3 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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