Living with Long QT syndrome 10
A heart rhythm condition with a long QT interval that can cause fainting, usually during exercise or strong emotion.
Understanding Long QT syndrome 10
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. Events can start from infancy through middle age, most often from the preteen years through the 20s.
Signs & symptoms
Symptoms vary from person to person. GARD says fainting is the most common symptom, and also lists:
- Fainting (syncope)
- Fast, abnormal heartbeats (tachyarrhythmias)
- Quivering upper heart chambers (irregular heartbeat)
- Interrupted electrical signals between heart chambers
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: long qt syndrome caused by mutation in scn4b; long qt syndrome type 10; lqt10; scn4b long qt syndrome
Patient organizations
- SADS FoundationLong QT syndrome 10 · United States
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Perspectives from people navigating life with Long QT syndrome 10.
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