Spreading Awareness for Heart Failure

By Heart-Failure.net Team

6 min read

Throughout February, we recognize both Heart Failure Awareness Week and American Heart Month. Our Health Leaders have written articles about their experiences with heart failure and other heart conditions. Recently, they shared information about Wear Red Day, a specific day to raise awareness. But we can spread awareness in so many ways and not just in one month of the year.

We asked our Health Leader team: What other ways have you spread awareness during Heart Failure Awareness Week and American Heart Month?

Hopefully, their examples will inspire you as you continue to spread awareness in your family or community, or help you start your own journey spreading awareness for heart failure.

Ways our team has spread awareness for heart failure

Writing, sharing, connecting

"While I might not be the most outgoing person, I am deeply passionate about raising awareness for heart failure. My gift is as a writer, and it is through this gift that my primary avenue for participation as a heart failure advocate unfolds.

I channel my passion into crafting meaningful blog posts. In these posts, my focus is on sharing insights and information about heart failure. Additionally, I delve into my own experiences working with heart failure patients in a hospital setting. I also share the valuable insights gained from my patients, whether through our work interactions or discussions.

On my own personal blog, my focus is on sharing what I learn with other healthcare professionals, mainly respiratory therapists. Here on heart-failure.net, writing has become my instrument to create awareness, provide support, and connect with those navigating the challenges of heart failure.

I strongly believe words can be powerful in spreading awareness about heart failure and other heart diseases. Each word contributes to building a supportive community that understands and cares about heart failure. People can use this knowledge to improve their lives and gain a better understanding, or they can use it to become better healthcare givers." – John

Working with different organizations and online groups, and spreading awareness through multi-media

"In 2006, I started advocating for congenital heart disease awareness on Capitol Hill with the Adult Congenital Heart Association (ACHA) during American Heart Failure Awareness Month. ACHA has been working to promote heart disease awareness since 1996, but more importantly, congenital heart disease.

After several years of advocacy, I took a long break due to the decline in my health and my heart failing. In February 2018, my adult congenital cardiologist recommended that I return to advocating and seeking out one or more than one congenital heart support group on Facebook to help me while I was going through the heart and liver transplant process. So, I joined a few groups on Facebook and then I was asked to join Conquering CHD to promote congenital heart disease awareness on Capitol Hill in February 2020, a few months after my heart transplant.

Not only that, I was asked to complete some podcasts with pediatric cardiac departments in a handful of pediatric hospitals to promote congenital heart disease awareness in February. Along with advocating on Capitol Hill in February 2020, a few congenital heart patients and I – who have or had the single ventricle heart anatomy – created a Facebook group just for single ventricle patients to educate and support one another through heart failure and the transplantation process.

Amidst all the podcasts, I was asked to join several adult congenital heart patients to make a book. This book is an anthology of essays, poems, and works of art by adults who share stories of hope and encouragement in this groundbreaking book. The book is called The Heart of a Heart Warrior, which is composed of 3 volumes.

Also within the Fontan group, one of our members created a special day in February. When she decided on a color for this event, there wasn't a color that was not already being used to bring awareness to a cause. So she decided to make it purple shirt day. This day we wear PURPLE to honor those affected by congenital heart defects. One in 100 babies is born with heart defects, making CHD the No. 1 cause of infant death due to birth defects.¹

The reason for wearing Purple is because the mixing of our oxygenated and unoxygenated blood made our skin look purple. It wasn't until we had the Fontan surgery that our skin did not appear purple due to the poor oxygenation. However, to this day we still appear purple when our circulation is not good.

Today, because of advancements in treatments, a baby born with CHD has a good chance of surviving to adulthood. Now, more research is needed to help these adults lead healthy lives. CHD is a lifelong condition requiring lifelong care. Wear PURPLE on February 9 to honor those living with CHD and those whose life was taken by CHD." – Leslie

Everyday conversations and interactions

"I tend to spread awareness in my conversations and interactions with others. For instance, when people ask how I’m doing, I give them a reasonable length, but specific, answer. If I’m not doing great, I explain why. If people ask when I’m going to be cured (since we can 'cure' cancer in many cases), I answer honestly: Never, and in fact, it’s progressive for me.

Often people are confused and ask questions, which opens the door to having an informative conversation. It has opened my eyes to the myriad ways to educate those in our lives.

People’s lack of understanding used to frustrate me, and often still does, but now I see that it’s also an opportunity to share information. People have thanked me for sharing and said that they had no idea that scar tissue could not be fixed, that a heart attack can do this to you, and that a heart transplant is not the magic cure for several reasons, among others. My age and gender also surprise people, and it’s a terrific opportunity to explain the burdens of heart failure and how it can impact anyone." – Morgan

Sharing personal experience, advocating, and connecting

"During any specific awareness month, that topic of discussion becomes 'popular.' Cardiovascular disease, stroke, and heart attack are all words we see and hear throughout American Heart Month. Oftentimes there's this push to get as much information out as possible. The heightened sense of urgency can be a patient advocate's dream filled with multiple requests from conducting interviews to serving on panels.

Personally, I’ve grown to love the rush and excitement. Being able to share my story, which is my lived experience. Connecting with patients, families, and communities. Advocacy, community outreach, and networking during American Heart Month can lead to awareness opportunities throughout the year or shift into new, lifelong partnerships.

I’ve been able to spread awareness during American Heart Month in a broad way – from connecting with legislators during AHA Wear Red/Lobby Day at the Georgia State Capitol, serving on a heart health panel, interviews with local news stations, and participating in radio segments to promote heart disease awareness are a few. However, connecting with patients brings me peace and a greater purpose.

Social media did not exist when I was diagnosed with pregnancy-induced heart failure (PPCM) 21 years ago. When LVAD implantation was mentioned to me 12 years later, I rejected it. I knew of no one like me experiencing the same, and I didn’t share similar struggles with the advocates they connected me with.

I’m of African-Indian descent, and I was a single parent raising 2 sons when I was diagnosed at 28. I underwent my first open heart surgery at 38, and I didn’t have a 'me' around. To be able to provide peer support to all women, especially during American Heart Month, is a responsibility I don’t take lightly." – Tina