Listen to Your Heart This Valve Disease Day with Lindsay Clarke

Show Notes

It’s Heart Month, which is a busy time at the Alliance as we prepare for Heart Valve Disease Awareness Day on February 22nd. In the spirit of Heart Month, we’re joined by Lindsay Clarke, the Senior Vice President of Health Education & Advocacy at the Alliance, to talk about the risk factors, symptoms, and importance of increasing awareness about Valve Disease. Lindsay has been heading up Valve Disease Day since its start in 2017 and leads our efforts to educate consumers, patients, caregivers, and healthcare professionals on a variety of diseases and conditions of aging.

Episode Transcript

Katrin Werner-Perez:

Hi everyone, welcome to This Is Growing Old, the podcast all about the common human experience of aging. My name is Katrin Werner-Perez and I’m the Health Programs Manager at the Alliance for Aging Research.

It’s Heart Month, which means it’s a busy time at the Alliance as we prepare for Heart Valve Disease Awareness Day On February 22nd. Joining me to talk about Heart Valve Disease Day is my colleague, Lindsay Clarke, the Senior Vice President of Health Education and Advocacy at the Alliance. Lindsay has been heading up Valve Disease Day since its start in 2017, and leads our efforts to educate consumers, patients, caregivers, and healthcare professionals on a variety of diseases and conditions of aging. Lindsay, thanks so much for coming to talk about one of our favorite topics.

Lindsay Clarke:

Oh, it’s my pleasure. As you know, I always love the chance to talk about Heart Valve Disease Day.

Katrin Werner-Perez:

Great. Well, let’s start by telling our listeners a little bit about valve disease.

Lindsay Clarke:

Right. Heart valve disease is a type of heart disease that involves damage to one or more of the heart’s four valves. To understand heart valve disease, it’s important to first understand how the heart works. The heart is responsible for pumping and continuously circulating blood throughout the body, and the heart has four chambers. They squeeze and relax in a coordinated manner to pump blood into the lungs and then through the circulatory system to deliver oxygen and nutrients to the rest of the body. So, between each of the four chambers is a valve, which is a thin leaflet of tissue that acts as a one-way door, allowing blood to pass through and then sealing tightly to keep blood from leaking backwards. If a valve is damaged, it might not open or close properly, and that disrupts that coordinated blood flow.

If the valve doesn’t close completely and allows the blood to leak backwards, this is called regurgitation or insufficiency. It may also more informally be referred to as a leaky valve. So, people who have been diagnosed might have heard they have a leaky valve. If a valve can’t open fully to allow enough blood to flow through, this is called stenosis and may also be referred to as a sticky, narrowed, or stiff valve. A common type of valve disease is called aortic stenosis. So, it’s the stiffening of the aortic valve. Now, each of the heart’s four valves can have regurgitation or be leaky, or stenosis or be stiff. They can even have both. While not every type of valve disease is serious, other types can lead to major complications. The heart has to work harder to get blood to the rest of the body, and it can even restrict blood flow. So, it can cause serious complications like arrhythmias, congestive heart failure, stroke, other types of heart disease, and even death.

Katrin Werner-Perez:

Wow, thank you for walking us through that. Why did the Alliance decide to start this awareness day in 2017?

when people think about heart disease, they’re usually thinking about things like heart attacks or congestive heart failure, but they’re not thinking
about heart valve disease…

Lindsay Clarke:

Well, we had for a number of years been creating a number of educational resources on valve disease, but it became apparent that a major gap in understanding and getting people diagnosed and properly treated for valve disease was a lack of awareness of what valve disease actually is. So, we did a survey of adults in the US and we found that three out of four people knew little to nothing about the disease. What this means is that when people think about heart disease, they’re usually thinking about things like heart attacks or congestive heart failure, but they’re not thinking about heart valve disease, which means they don’t know and understand the risk factors, they don’t watch for their symptoms, and they’re not getting diagnosed early. An earlier diagnosis often leads to better treatment outcomes. So, in 2017, we started Heart Valve Disease Awareness Day to bring like-minded organizations together to coordinate on messaging and outreach in order to reach more people. It’s now recognized every February 22nd during American Heart Month.

Katrin Werner-Perez:

Amazing. It sounds like you touched on it a little bit, but what are the goals of Valve Disease Day?

Lindsay Clarke:

Right. Well, the goals of Heart Valve Disease Awareness Day are to use our collective and coordinated voices to raise awareness of the risk factors and symptoms of heart valve disease to improve earlier detection and treatment and to ultimately help save lives. Since I’m assuming there are listeners today that haven’t heard about heart valve disease, not uncommon to have not heard about it, let me dig into those things a little bit more before we move on. It’s really important for people to understand the risk factors for valve disease.

Age is the most common risk factor since what happens is wear and tear over time can cause damage. We know that about one in 10 people over age 75 suffer from moderate to severe heart valve disease. Some people are born with abnormalities to a valve like a bicuspid valve that can lead to problems later in life. A bicuspid valve is when one of the valves has two leaflets instead of the normal three. And then while it’s relatively rare in the US and other developed countries, certain infections like rheumatic fever, which develops from untreated strep throat, can cause valve problems.

We also know that heart problems like previous heart attacks can cause damage to the valves, and then things that we think of as risk factors for other cardiovascular diseases are also risk factors for valve disease. So, uncontrolled high blood pressure, high cholesterol, high blood sugar from diabetes, those can also raise the risk of heart valve disease. And then, we also know that there’s certain radiation and chemotherapy for specific cancers that can cause damage to the valves.

It’s also important that people know what symptoms to watch for, and there’s a simple pneumonic to help us remember, which is LISTEN. L is lightheadedness, fainting, or feeling dizzy; I is an irregular heartbeat, heart flutters, or even chest pain; S is shortness of breath after light activity or even while laying down and not exerting yourself; T is tiredness even after plenty of sleep; and then E is edema, which is the swelling of the ankles and feet; and N is not feeling like yourself. If things just feel off, it’s getting harder to get to the mailbox, it’s getting harder to get up the stairs, I can’t do the things that I used to do as well, I just feel worn out, this is something that’s worth talking to a healthcare professional with.

Also, some people don’t always have symptoms with valve disease. So, they need to not only understand the risk factors and their symptoms, but they also should go to their doctor for a regular heart check. Valve disease can often be diagnosed with simply listening to the heart with a stethoscope. Oftentimes, healthcare professionals can detect an irregular heart zone or a murmur with that check, and then if they suspect that something’s going on, they might recommend some other tests like an EKG or a heart ultrasound or an exercise test, other things to figure out what’s really going on.

But the good news in all of this is that valve disease can usually be successfully treated in patients of all ages. Usually, it’s done with a valve repair or a valve replacement, and that can be done surgically or maybe done with less invasive procedures. Most people that have a repair or replacement can expect to return to a normal life after recovery. Many patients even report feeling better than they have in a long time. The amount of recovery varies depending on the type of surgery or procedure. Those are the basics we really want people to understand. Are they at risk? Does something feel off? Is there something I need to talk to my healthcare professional about? And then, all of us should actually be getting our hearts listened to regularly.

Katrin Werner-Perez:

Great. Well, since I’ve been working closely with you on this year’s planning, I know all about the exciting things going on for this year’s Day, but would you share with our listeners?

…we now have 120 partners and growing that join us every day or every year for Heart Valve Disease Awareness Day.

Lindsay Clarke:

Absolutely. Now, I won’t possibly touch on everything, everyone should go to valvediseaseday.org to see what’s going on, but I can tell you that we now have 120 partners and growing that join us every day or every year for Heart Valve Disease Awareness Day. They include disease organizations, patient advocacy groups, professional societies, heart and vascular centers, and hospitals and health systems. We even have a handful of international partners, and we couldn’t do it without them. So, there’s a lot of things that we’re planning that they’re planning. It’s still coming together because it’s a couple of weeks until Valve Disease Day, but there are some things that I can highlight while we’re here.

We’ll be doing a radio media tour to take these messages to radio listeners across the country. We’re sharing a video on TV as a PSA. We’re doing a letter to the editor, an op-ed, a press release, lots of social media, outreach to digital opinion leaders. You name it, we’re doing it. We’ve also challenged our partners and individuals who follow us to take the screening challenge. They are hosting screening events. They’re getting their hearts listened to. They’re listening to their patients’ hearts. A couple of events that are happening on Valve Disease Day include our flagship event that we are co-hosting at a community screening event with the National Caucus and Center of Black Aging and MedStar Health here in Washington, DC.

Folks can come and learn about valve disease. They can get their hearts checked. One of our partners, Heart Valve Voice Canada, is leading and coordinating a number of screening events across Canada, including one on Parliament Hill and Ottawa and at the West Edmonton Mall, which is the second most visited mall in Canada. It’s huge. It’s really exciting what they have planned. The managing director of Heart Valve Voice Canada will be on this podcast later this month to talk about their plans and how they’re helping to make Heart Valve Disease Awareness Day a big day in Canada. So, please tune in to listen here more.

There’s screening events being planned by Carondelet Health Network, Abrazo Health, Lehigh Valley Heart and Vascular Institute, and so many more. Our partner at Minneapolis Heart Institute Foundation is hosting an educational event with prominent experts in valve disease. MedStar Health, in addition to doing the event with us, will be hosting a Facebook Q and A with some of their leading experts. There’s walks being planned in Africa, as well as a webinar with experts from around the globe. And then, our partners from Rock from the Heart will be hosting a number of educational events and concerts featuring Sebastian Bach, Rick Springfield, and Night Ranger. So, there’s a ton of stuff going on. People can go to valvediseaseday.org/events to see more about all of these and more.

Katrin Werner-Perez:

Wow, that is incredible. Well, before we wrap up, would you let our listeners know how they can get involved?

Lindsay Clarke:

Yes. I already mentioned the URL, but to bring it home, everyone should go to valvediseaseday.org. They can learn about becoming a partner. They can learn more about valve disease. They can also learn about how to get involved in the screening challenge. And then that challenge, just to talk about what it means for individuals to take the challenge, is first step, get your heart listened to or make an appointment to do it. There’s only a few weeks until Valve Disease Day. If it means just making an appointment, that is fantastic. The second step is to take a picture. So, when you’re in the car on the way to your healthcare professional, or you’re in the waiting room, or even if you’re getting your heart listened to, or a picture of your calendar with the appointment on it, take a picture.

Show how easy it is and how important it is to you. And then third, this is really important, is to share it on social media. Show the people that follow you that you care about your heart health and that they should care about theirs as well. Use the hashtags, valve disease day and listen to your heart, and then post between now and Valve Disease Day. We know a lot of people will be sharing their pictures of screenings between 1:00 and 3:00 PM Eastern on February 22nd. So, if people want to hold on to those photos and share it then, there’s going to be a lot of momentum and a lot of action there, which I think will be really exciting.

Katrin Werner-Perez:

Great. Well, this is such great information. I’m so excited to see everyone engaged, get their hearts listened to, and raise awareness together on February 22nd. I know I’m going to get my heart listened to, get my family to get their heart listened to and all our loved ones. So, thank you so much for sharing all this important information.

Lindsay Clarke:

Well, thank you, Katrin, for helping make it all happen, I couldn’t do it without you, and for taking the time to talk to me about it today so we can share all this good stuff with our listeners. To everyone listening, happy early Heart Valve Disease Awareness Day.

Katrin Werner-Perez:

Great. That is it for today’s episode. Make sure to tune into Valve Disease Day at www.valvediseaseday.org and on social media at @valvediseaseday. For everyone tuning in, thank you so much for listening to This Is Growing Old. If you’re enjoying the show, please subscribe wherever you get your podcasts. Have a great day.