I don’t always speak on a lot of my personal family situations, but it’s time to tell my true story & help bring awareness to #LongQTSyndrome 💙
My sister #Denver was diagnosed with Long QT Syndrome (LQTS) — a rare heart-rhythm condition that messes with the electrical signals that tell your heart when to beat and when to reset. On an EKG, doctors look at the distance between the “Q” and the “T” waves; in LQTS that interval is longer than it should be, so the heart takes too long to recharge between beats. That delay can throw the heartbeat into a fast, chaotic rhythm (doctors call it torsades de pointes), which can cause sudden fainting, seizures, or even cardiac arrest — sometimes with little warning.
What that looks like in real life:
• Fainting (syncope) that can happen during exercise, strong emotions, or even a startling sound like an alarm.
• Before a faint, people may feel lightheaded, see blurry vision, notice a pounding heart, or feel weak.
• Some folks — especially kids and teens — never have symptoms and only find out after an EKG or genetic test.
• LQTS can be inherited (passed down in families) or acquired from certain meds/electrolyte shifts. It’s estimated around 1 in 2,000 people have it, though many go undiagnosed.
There’s no cure, but it’s manageable. Treatment usually starts with lifestyle tweaks (avoiding QT-prolonging meds, staying hydrated, no extreme endurance sports without clearance) plus beta-blockers to steady the heart. Some people also get a pacemaker or an implantable cardioverter-defibrillator (ICD) that can shock the heart back into rhythm if needed.
Why I’m sharing: my sister is one of the strongest people I know, and like so many families — from
@thelongcutielegacy honoring Isla Hutton, to the SADS Foundation stories of siblings diagnosed after a sudden loss — we found out because we started looking. Early EKGs, genetic testing, and family screening save lives. If you have a family history of unexplained fainting, seizures, or a relative who died young from a “heart thing,” talk to your doctor about an EKG and ask whether LQTS should be ruled out.
If this helped you learn something new please share ~
#LQTSawarenes
