Living with Long QT syndrome 9
A heart condition present from birth in which the heart's electrical reset takes longer than usual, and can cause fainting or seizures.
Understanding Long QT syndrome 9
The QT interval is the time it takes for the heart to contract and then relax. A long QT can cause an abnormal heart rhythm called torsade de pointes. This can lead to fainting or seizures. There are different types of long QT syndrome caused by different genes.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Fainting (syncope)
- Slow heart rate (sinus bradycardia)
- Chest pain
- Seizures
- Abnormal heart rhythm (ventricular arrhythmia)
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
It is caused by changes in a gene linked to long QT syndrome, and it is inherited in an autosomal dominant way. GARD says different types are caused by different genes.
Also known as: cav3 long qt syndrome; long qt syndrome caused by mutation in cav3; long qt syndrome type 9; lqt9
Patient organizations
- SADS FoundationLong QT syndrome 9 · United States
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Perspectives from people navigating life with Long QT syndrome 9.
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