Living with Long QT syndrome 6
A heart rhythm condition with a long QT interval that can cause fainting, usually during exercise or strong emotion.
Understanding Long QT syndrome 6
The usual rhythm problem is torsade de pointes, which often stops on its own and causes fainting. Events typically happen during exercise or emotional stress, less often during sleep, and usually without warning. About half of untreated people with a disease-causing gene change have symptoms, usually one to a few fainting episodes.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Fainting (syncope)
- Torsade de pointes (a fast, abnormal heart rhythm)
- Ventricular fibrillation (a chaotic heart rhythm)
- Heart stopping to beat (cardiac arrest)
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 genes linked to long QT syndrome, and it is inherited in an autosomal dominant way. GARD does not name the specific gene in this record.
Also known as: kcne2 long qt syndrome; long qt syndrome caused by mutation in kcne2; long qt syndrome type 6; lqt6
Patient organizations
- SADS FoundationLong QT syndrome 6 · United States
You are more than your diagnosis
Perspectives from people navigating life with Long QT syndrome 6.
Explore research for Long QT syndrome 6
Explore actively recruiting Long QT syndrome 6 studies with HealthSpark.
Find actively recruiting studies for Long QT syndrome 6 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 Long QT syndrome 6 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 Long QT syndrome 6
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 Long QT syndrome 6 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.