When Trudie Lobban’s daughter Francesca, now 29, was a baby, the girl had fainting episodes up to eight times a day. It took three years until Francesca was diagnosed with Reflex Anoxic Seizures (RAS), a condition that caused her heart to briefly stop.

Lobban founded the Arrhythmia Alliance, a nonprofit organization working to improve the diagnosis, treatment and quality of life of people with arrhythmia — that is, irregular beating of the heart.

“Arrhythmia is one of the leading causes of death — 360,000 U.S. citizens die each year from cardiac arrest,” says Lobban, whose husband died from a sudden cardiac arrest 10 years ago. Sudden cardiac arrest is different from a heart attack since it’s due to a change in heart rhythm.

Eighty percent of those deaths could be avoided if the arrhythmia is diagnosed and treated or if there’s an automated external defibrillator (AED) nearby, which can be used to shock the heart to reestablish rhythm.

Diagnosis and treatment

With arrhythmia, which is genetic in some cases, a person’s heart might beat too fast, too slow or simply unpredictably. That irregularity means the heart can’t pump blood effectively to the brain, lungs and other organs, potentially causing damage or resulting in death.

At any age, don’t ignore symptoms.

Common symptoms include premature or skipped beats, palpitations and fainting, as well as dizziness, light-headedness and fatigue.

Arrhythmias are categorized by where they originate in the heart — upper or lower chambers — as well as whether it causes the heart to beat too fast or too slow.

“Some of these conditions can be treated if diagnosed, but they can be fatal if not,” says Lobban, whose daughter Francesca is getting treatment and managing her condition.

Doctors diagnose arrhythmia by monitoring the heart’s rhythm, such as through electrocardiogram testing. Treatments can include medications, pacemakers or implantable cardiac defibrillators.

Know your heart

“We need to get to the public before they become patients,” says Lobban, who wants adults and kids to know their heart rates and heart rhythms. The American Heart Association says resting heart rates should be between 60 and 100 beats per minute.

At any age, don’t ignore symptoms.

“If your child passes out, if you’ve got a history of sudden death in the family, then there’s no such thing as a simple faint,” Lobban says. She urges parents to have their children medically evaluated if they faint or show any other symptoms of arrhythmia.

Advocacy

The Arrhythmia Alliance is creating awareness and is a resource for patients and communities.  For example, they equipped 31 police cars in South Carolina with AED devices and within the first year, two lives were saved.

For her work and advocacy, Lobban was awarded the MBE — Most Excellent Order of the British Empire award — by Queen Elizabeth II in 2009. She’s honored, yet humbled.

“This award wasn’t for me,” she says. “It was for all those who helped bring about change with arrhythmias and to save lives.”