“Our Gift to the World”: Three generations of Framingham Heart Study help fight heart disease

For nearly 50 years Ken Wilkinson has dutifully committed time as a research volunteer to participate in all kinds of heart-related tests—blood pressure measurements, cholesterol screenings, heart rate checks, MRIs, EKGs. Like his wife’s mom once did and his own six children do now, the 77-year-old retired plumber volunteers for the Framingham Heart Study, a long-term, multigenerational study that has led to discoveries that have changed the way Americans look at—and get treated for—heart disease.

Launched in 1948 by the National, Heart, Lung, and Blood Institute (NHLBI) and now a joint project of NHLBI and Boston University, the long term observational study has been responsible for much of what we now know about risk factors for heart disease, the leading cause of death in the United States. High blood pressure, high blood cholesterol, smoking, obesity, diabetes, physical inactivity—through time the study found all to be culprits, and because of this knowledge, say experts, millions of lives have been saved.

Now, 70 years since the study began, Wilkinson and his family say they can look back and feel proud about all that, proud that their three generations have helped so many others. As Lauren Giombetti, one of Wilkinson’s daughters, put it: “It’s a labor of love for everyone involved, for the participants and for the healthcare workers as well.”

Still, for this Massachusetts family, something far more personal has been in play through the many years they’ve found themselves at clinics, inside MRI machines, on treadmills, or at home recording what they eat and how much they move. It’s how their own health awareness has changed. As Wilkinson himself tells it, the study didn’t just save other people. It saved him, too.

Wilkinson joined the study when he was 30, after a brief stint with the Navy. Decades passed, he continued checking in for routine tests, and almost always he left with little sign of heart disease. Then one day about six years ago, one of his tests revealed a problem:  His left carotid artery was 80 percent blocked. A blocked artery is a risk factor for stroke and could even lead to death.

“It scared the hell out of me,” says Wilkinson. “I figured I was headed for a Roto-Rooter either way, either by surgery or through my job as a plumber.”

He was baffled. Years before, thanks to the study findings, he had dramatically cut down on smoking, a habit he had picked up as a teenager. He also started eating more fruits and vegetables and less steak, buttered potatoes, and gravy, all high in saturated fat. And he cut way down on the salt, which he once sprinkled all over his food (“That stuff is murder on the heart,” he says.)

So, when he got word that his artery was blocked, Wilkinson decided it was time to step up his burgeoning good habits even more. His doctors told him he would not need surgery unless the blockage worsened; his job was to keep eating well and exercising, taking his medications to control his cholesterol and blood pressure, and getting his artery monitored for signs of change. Wilkinson eventually quit smoking altogether and now, he says with amazement, half the time he eats like a vegetarian.

Wilkinson counts himself a very lucky man.  Without those “soup to nuts” checkups and the wisdom from the study, he says he may not have known about his problems or what to do about them. And his artery blockage might have been much worse. He’s effusive in his gratitude. “Thanks to the study, people are living a hell of a lot longer than the used to. And that includes me.”

Wilkinson‘s daughter Lauren Giombetti, a 34-year-old school teacher, says it hasn’t been just her father but the entire family—her mom and her five siblings—who have seen benefits. And, like many others among the 5,000-plus original participants who’ve seen their families volunteer through three generations—they’ve witnessed many changes.

Giombetti, who was just three when she was first enrolled, says the tests have evolved both in scope and sophistication. “When I was a child, I remember getting my weight and height checked, along with blood work, and I gave an updated photo,” she recalls. “The study was more about overall health and wellness, so my diet and exercise were tracked. I would wear an activity monitor for the week following my exam, and I would be asked about the kinds of foods I ate.”

As Giombetti became older, food logs to track dietary habits became longer and now include a checklist of nearly 100 different foods. Exams now include tests to measure liver function, blood oxygenation, lung function, stress levels on the heart, and even cognitive ability. And now she uses a smartwatch to monitor her blood pressure.

Giombetti admits that some of the tests can be lengthy and a little stressful. She remembers, for instance, being hooked up to an EKG machine while riding an exercise bike, all while having her nose pinned shut to ensure she was breathing out of her mouth only.  And Wilkinson says he struggled when he underwent a brain MRI because it meant being confined in a tubular chamber that made him feel claustrophobic.

But it’s all been a small price to pay, the family says, for the bounty of knowledge the study has gathered and used for the good. From 1969 to 2013, U.S. deaths from heart disease fell almost 70 percent, due in large part to the kind of discoveries made through Framingham.  Wilkinson says he hopes the study will continue for future generations of families, including his grandkids.

“The tests we do for Framingham are not just for us,” he points out. “These tests help the whole world. Framingham is our gift to the world.”