Heart Sisters: A Patient Voice in the Fight against Heart Disease in Women

Posted by Corindus Staff
February 11, 2014

Recently, we got the chance to speak with Carolyn Thomas, author of the Heart Sisters Blog, a key advocate for women living with heart disease. Her commitment to awareness has influenced countless women and their families to take steps to prevent heart disease. In 2012, she was named one of the top 10 online influencers making a difference in the fight against heart disease.


Carolyn’s Story


My story actually began two weeks before I was finally hospitalized with a fully occluded coronary artery in 2008. I'd been sent home from the E.R. with a misdiagnosis of indigestion - despite presenting with textbook 'Hollywood Heart Attack' symptoms. "You're in the right demographic for acid reflux!" was the E.R. doctor's emphatic pronouncement to me.


I left the hospital that day feeling so embarrassed - because I'd just made a big fuss "over nothing". All of my cardiac test results that day had been "normal". Much later, I learned while at Mayo Clinic that "normal" test results like mine are more common in female heart attack cases because for decades, virtually all cardiac diagnostic tests have been developed, researched and designed for men - not women.

After that first E.R. visit, I spent two weeks suffering increasingly debilitating symptoms - but hey, at least I knew it wasn't my heart! When the symptoms finally became unbearable, I returned to the same E.R. - but this time to a new and correct diagnosis of "significant heart disease". I was taken directly from the E.R. to the O.R. for emergency treatment of a 95% blocked Left Anterior Descending coronary artery, or what doctors call the "widow maker" heart attack.


After my heart attack, I was so shocked - and angry! - about what had just hit me that I became obsessed with finding out a much as I could about women's heart health. That's how I found out about the annual Women Heart Science and Leadership Symposium for Women with Heart Disease at Mayo Clinic in Rochester, Minnesota. I applied to attend this prestigious community health activism training - and became the first Canadian ever accepted into the program. Since 'graduating' from Mayo, I've spoken to thousands of women about heart disease. My presentations have been called "part cardiology bootcamp and part stand-up comedy!" I also launched a blog about women and heart disease called Heart Sisters.


What does women’s heart health awareness mean to you? What are the important things people should know about heart health prevention, especially in women?


Women's awareness of heart health is generally dismal. Many of us unfortunately still consider heart disease to be a man's problem. And we're not the only ones who believe this! In 2005, the American Heart Association surveyed physicians, asking how many are aware that more women than men die from heart disease each year (a stat that's been true, by the way, since 1984). The survey results were shocking: only 8% of family physicians knew this fact, and - even worse! - just 17% of cardiologists were aware of it!

We know, for example, that up to 80% of heart disease is considered preventable through lifestyle improvements like healthy eating, daily exercise, and effective stress management.


What types of questions should people be asking their doctors to become more engaged in their own heart health?


Women should not be looking to their doctors to make themselves more engaged. For the past five years, I've asked the women in my heart health audiences questions like "How many of you know what your blood pressures numbers are?" It's common to have fewer than half the audience raise their hands. Then I ask: "How many of you don't know your numbers, but your doctor has told you everything is FINE?" This is the BIG question - because women who raise their hands for this question are essentially abdicating responsibility for their own health awareness. It's up to YOU - not your doctor - to know your numbers, learn about cardiac risk factors and how to address them, educate yourself, and live your life as if you're an adult, not a dependent little girl.


What do you think will be the next big breakthrough in heart health? Where do you see room for improvement or challenges in the current treatment landscape?


There's a growing body of scientific evidence suggesting that a regular exercise program is as effective as cardiac drugs or even implanting stents to open up blocked arteries in heart attack survivors. Medications can be life-saving aids for heart patients, but are simply no substitute for smart lifestyle choices. And new cardiovascular disease treatment guidelines now tell us that we don't need to get blood tests to check our LDL (bad) cholesterol anymore - because we should be looking at our overall cardiac risk factors instead. Yet I've heard and read physicians complain that they don't get financially reimbursed for lifestyle coaching during patient visits, and that many patients just prefer to take a pill rather than start exercising. That's why I like Kentucky cardiologist Dr. John Mandrola's wise advice: "You only have to exercise on the days you plan to eat!" Another big challenge: we need to do something about what doctors call "treatment-seeking delay behaviour" in women heart patients - we are notorious for putting everything and everybody ahead of our own needs - yes, even in the middle of a heart attack! I now urge my audiences and blog readers: YOU KNOW YOUR BODY! YOU KNOW when something is just not right. You must demand the same kind of care you'd expect if it were your daughter or your sister or your mother experiencing what you are!"


If there is one thing that you could tell women living with heart disease, what would it be? What are your own lessons learned?


Many non-patients in my heart health audiences ask me how to figure out if they are at high risk for one day having a heart attack as I did. What I now tell everybody is to "live as if you are at very high risk.” There is simply no downside to eating a heart-healthy Mediterranean diet, for example, or exercising every day or learning effective ways to manage day-to-day stress. This boils down to one warning: women need to learn to make ourselves our #1 priority for a change. And for women already living with heart disease, I'd remind them of a somber reality: that heart disease is a chronic and progressive illness. That's why prevention is so important - because we know that the biggest risk factor for having a heart attack is having already had one.


Why did you want to launch Heart Sisters? How has the blog transformed your own opinions and awareness?


At first I launched my blog HEART SISTERS in 2009 only as a static 3-page website just to provide basic information about my women's heart health presentations. But by now it's grown to an award-winning website that's attracted over one million viewers in 190 countries! I refer to my blog writing as "cardiac rehab for my brain". I'm a naturally curious person who loves to research stuff, so I tend to take complex questions about women's heart health and try to translate them into plain English for my readers. Because I have had ongoing cardiac issues since surviving my heart attack, I've been unable to resume my career in public relations - but my PR friends now tease me that this is what happens when a PR person has a heart attack: we just keep doing what we know how to do. The women who contact me through my blog continue to shock me with their stories of misdiagnosis. We know that women are under-diagnosed - and worse! under-treated even when appropriately diagnosed - compared to our male counterparts. As cardiologist Dr. Noel Bairey Merz recently wrote: "The gender gap in women's cardiac care is alive and well!” I'm doing my best to help address that gender gap by trying to educate my readers about their own heart health.


Since launching Heart Sisters in 2009, what is the greatest feedback/story you have heard?


I've been thrilled and humbled by the number of women who have contacted me saying: "I remembered what you wrote about ___ …" that motivated them to call 911 in mid-heart attack, or who told me how reading my blog articles helped them get through their traumatic cardiac event, or post-heart attack depression, or help them understand what a loved one with heart disease might be going through.

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