The Stories Behind the Statistics

How often have you heard on the news or read in the paper or read in the paper the phrase, “a new study finds…”? In my ten years as a news producer, I wrote this phrase more times than I can count because medical studies and new health findings are newsworthy topics. There is value in our being aware of emerging scientific developments and how the data could affect our lives.

The personal stories from those who benefit from the research are less likely to be written. Yet, journeys to better health underscore the value of scientific study and emphasize the improved outcomes that result from research.

Hannah Perry, Laura Johnstone, and Karen Lombardi were each searching for the reason they were having severe cardiac symptoms when they were referred to the Yale New Haven Hospital Comprehensive Coronary Physiology Program, led by interventional cardiologist Samit Shah, MD, PhD, Assistant Professor of Medicine. Each of them were involved in a WHRY-funded study, and recently sat down with Drs. Shah and Mazure to talk about their experience.

“I remember having an awful feeling, I just did not feel right. Looking back, I recognize it was probably the compression and the tightness, but it was new to me,” Laura Johnstone recounted. For Laura, it took twelve years, multiple traditional tests for heart disease, and several surgeries, to find out that the correct diagnosis for her symptoms was coronary vasospasm, which can cause a heart attack and associated symptoms, such as chest pain, shortness of breath, and nausea.

Coronary vasospasm, more common in women than men, occurs when the large and small blood vessels in the heart spasm and reduce blood flow. The diagnosis is often missed because traditional diagnostic testing for heart disease is centered around finding a blockage in a blood vessel, which is usually the cause of heart attacks. But many patients, especially women, can have heart attacks in the absence of blockages, and diagnoses such as coronary vasospasm and microvascular disease, or small vessel disease, have not historically been investigated.

For these patients, achieving an accurate diagnosis would not have been possible without WHRY-funded research led by Dr. Shah that allowed him to study the value of a novel heart catheterization protocol for diagnosing coronary vasospasm and microvascular disease. By focusing on conditions that affect more women than men and recognizing that heart attacks have historically been underdiagnosed in women, these three women – along with countless others – will benefit from improved health and well-being.

Although each woman’s story was unique, there were shared similarities to getting to the correct diagnosis and appropriate treatment. All three women spoke of the anxiety that came with not knowing what was causing their symptoms and the relief they finally felt when they had an answer. “If it were not for this research, I would still be wondering what is wrong with me and I would have continued to have a diminished quality of life,” said Hannah Perry. “I’m very grateful that research is being done to help women and improve my life.”

As part of the ongoing study, Dr. Shah is developing a reporting measure specifically for women to characterize and identify the symptoms of blood vessel disorders that reduce blood flow to the heart. This resource, as well as the technically advanced diagnostic method developed by Dr. Shah, are being shared nationwide to help other clinicians give their patients the same quality of care and improved outcomes.

“I ended up in the right place, I was very lucky, but it shouldn’t be luck. Women need to have access to care coming from new discoveries so they can get proper treatment and live their lives to the fullest,” Karen Lombardi said.

All three of these interviews were recorded and WHRY is currently working to produce a series of videos sharing Hannah, Laura, and Karen’s experiences. It was a privilege to hear their stories and see first-hand the value of scientific exploration. Their experiences, along with WHRY’s extensive communications network, are raising awareness of heart disease in women - and the importance of researching the symptoms and conditions that are experienced by women.