This page is titled Long QT Syndrome because that is how our story began. Phyllis (mother) was diagnosed with Long QT syndrome following Simon's death. As you would expect, we've learned so much about this and other electrical conditions and want to share that information with you.

Long QT Syndrome is an electrical heart condition (an arrhythmia). This means that the rhythm of the heart gets interrupted and it can lead to sudden cardiac arrest which is fatal about 90% of the time. A person experiencing sudden cardiac arrest will drop to the floor and immediately lose consciousness. They will stop breathing and have no pulse. If this occurs, it is important to keep a cool head and follow the cardiac Chain of Survival to save that person's life.

Measuring QT Interval

The name isn’t the most creative, but it actually reveals the problem. The squiggly lines on an electrocardiogram (ECG) are named P, Q, R, S and T. When the line between Q and T is a little too long, it suggests that the heart is not recharging quickly enough. Hence, you have Long QT. However, we are talking about milliseconds, so don’t go trying to figure this out on your own! There are cardiologists (called electrophysiologists) who go to train for an extra year to evaluate stuff like this.

Getting Tested for Long QT Syndrome

Many people with Long QT actually have no idea they have it. It could never amount to anything or it could lead to sudden cardiac arrest occurs. We just don’t know enough . . . yet.  Long QT is usually a genetic condition, which means that you get it from a relative.  However, it can also be induced by certain drugs that cause the heart to speed up.

It is important for you to learn the warning signs.  You should also know your family history! Has family member under the age of 50 has died suddenly and unexpectedly from an unknown cause? Go see your doctor and request an ECG (electrocardiogram).

Most people with Long QT are treated with a medication known as a beta blocker. This medication in combination with some basic lifestyle changes may be all that is required. Some people may require medical intervention, like an implantable cardioverter defibrillator (ICD). Your doctor will evaluate your symptoms and risk to determine the right treatment for you.

What Are Other Electrical Disorders

Wolff-Parkinson White Syndrome is a condition where an extra electrical pathway in your heart causes it to beat faster.

Brugada Syndrome is a genetic disorder that can cause a dangerous heartbeat.

What is Simon’s Heart Is Doing

We believe that every student should get a heart screening. We screen our kids eyes and ears. Why not their hearts?

A heart screening, with a physical exam and thorough medical history, is the most effective way of detecting conditions (like Long QT) that can lead to sudden cardiac arrest and death. Find a screening near you. Find a specialist near you. For more information about Long QT Syndrome, visit our Best Resources List.