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How One Woman’s Atrial Fibrillation Experience Inspired Her Commitment to Patient Advocacy

Mellanie True Hills, Photo: Courtesy of Debbie Lefever

“Life is too short to live it in afib.” That’s the message of Mellanie True Hills, the founder and CEO of StopAfib.org.

Over six million people in the U.S. live with atrial fibrillation (known as afib), which is an irregular heartbeat. The condition can lead to blood clots, stroke, heart failure, and even dementia. 

“Afib increases your stroke risk by 500%, so we need to do something about it,” she says. “People need to be aware of it and get treated if they have it.” 

Symptoms can be different for each patient, but often include palpitations or thumping in the chest, and/or shortness of breath. She says one-third of people with afib don’t feel any symptoms and don’t realize they even have the condition. She wants people to get diagnosed and treated before they have a stroke.

She encourages doctors to screen patients who are most at risk for a stroke, including those over 65 who have conditions like high blood pressure or diabetes. Technology may help too. Wearables, such as an Apple watch or a KardiaMobile device, may help consumers monitor their heart rhythm, so they can get diagnosed and treated early if needed.

Close call

In 2003, Hills started having heart problems and had a stent placed. A few months later, she experienced an odd sensation in her chest, her heart was racing and thumping, her right leg was cold and pale, and the vision in her right eye was blurry.

“At the emergency room, we discovered that I had had blood clots and a close call with a stroke,” she says. “And it was due to this condition called atrial fibrillation, which I had never heard of. That was pretty scary.”

“I never knew when it was going to happen, and I couldn’t tie it to any particular thing, because the circumstances were different every single time,” she says.

Then in 2005, she had a mini maze procedure. This minimally invasive surgical ablation uses a radiofrequency energy source to scar the tissue, creating a fence that stops erratic electrical signals from entering the heart and causing afib. The procedure, which doesn’t require opening the chest, has a shorter recovery time. This September, she is celebrating 15 years of being free of afib.

From patient to advocate

Hills had learned so much from her afib experience that she decided she wanted to help others with the condition, too. In 2007, she started StopAfib.org, a nonprofit organization for those living with afib. The organization and the Heart Rhythm Society got the U.S. Senate to declare September as National Atrial Fibrillation Awareness Month.

These days the international advocate speaks at medical conferences around the globe. She collaborates on projects with researchers and medical societies and serves on 25-30 steering committees and working groups per year. 

This year, the annual “Get in Rhythm. Stay in Rhythm.® Atrial Fibrillation Patient Conference,” held from October 30-November 1, will be virtual. The conference features world-renowned expert doctors, including the innovators in afib treatment who talk about their leading-edge innovations.

Take control of your afib and get your life back by learning more about the condition at StopAfib.org andStopAfibLibrary.com as well as attending the virtual patient conference.

“The conference is a win-win-win—the faculty members win, our industry partners win, and the patients especially win because we are all working together to make lives better,” she says.

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