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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

Over six million people in the United States 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 percent, so we need to do something about it,” said Mellanie True Hills, founder and CEO of StopAfib.org. “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, thumping, or irregular beating. Hills says 1 in 3 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 most at risk for stroke, including those over 65 who have conditions like high blood pressure or diabetes. Tech may help, too. Wearables like an Apple watch may help consumers monitor their heart rate, so they can get diagnosed and treated early, if needed.

Close call

In 2003, Hill 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, her right leg was cold and white, and her right eye was blurry.

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

The doctor prescribed a blood thinner so she didn’t have a stroke.  But the heart episodes continued a couple of times every month. 

“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 said.

Then in 2005, Hills had a mini maze procedure — a minimally invasive surgical ablation that uses an energy source to scar the tissue. The procedure, which doesn’t require opening the chest, has a shorter recovery time. This is Hill’s 15th year free of afib.

From patient to advocate

Hills had learned so much from her afib journey that she decided she wanted to help others with the condition. 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 Oct. 30-Nov. 1, will be virtual. The conference features world-renowned expert doctors, including the innovators in afib treatment, who will talk about their cutting-edge innovations.

“It’s really a win-win-win kind of situation,” Hills said. “The faculty members win, sponsors and industry partners win, and the patients win because we see this synergy of everything coming together and people working together to make lives better.”

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