Patient Education and Research

Doesn’t it feel great to speak with someone who understands you? It’s common for people to connect with someone who has a similar lived experience. Through advocacy, people can connect; and educate each other. Most importantly, they can empathize with one another. Our talk today creates an open dialogue for patient education and research in the heart condition community.

Welcome to Living with Heart Disease, a Heart of a Giant production. Is it possible to live a longer quality of life after a heart disease diagnosis? Listen to the patients, support systems, and care providers who have resolved to become healthier. Join host Somaneh Bouba as we share the challenges and triumphs. Discover what it really means to survive and thrive with a heart condition.

Today’s main guest is Wendy Coe Borsari. Wendy manages Hypertrophic Cardiomyopathy (HCM) as she contributes to the education and research happening in the heart condition community. Her family history with the condition stretches as far back as seven generations. After her children were diagnosed, Wendy became even more active in advocacy for HCM and other genetic cardiomyopathies.

More and more, Wendy strives to make sure the patient voice is front and center of what cardiology professionals are doing. She helps humanize research studies while also empowering patients to learn more about their conditions and understand the results of the studies they participate in. Wendy works with the Sarcomeric Human Cardiomyopathy Registry (SHaRe), pharmaceutical companies, and community initiatives. She is motivated to get the heart condition community talking and taking action towards a brighter, more educated future.

Choosing a topic of conversation can be more important than deciding to have a conversation. What are topics the heart condition community must start talking about? Today’s live audience members bring their insights on topics specific to their journey. Together, everyone talks about how to ask for help, and how to be open to receiving help from a support system that doesn’t always know what you need. The conversation also touches on living with noticeable heart condition devices and more.

Wendy encourages people to connect with others to build a community that advocates for each other. Listen as she discusses SHaRe, the international push to contribute to research, and strong relationships with medical teams. Enjoy this community dialogue of patient education and research.

Timestamps:

[02:10] - Wendy Coe Borsari is very active in outreach and education initiatives throughout the heart condition space. How did she get started?

[04:46] - Wendy explains her family history of HCM, and how her mother inspired her interest in research.

[09:49] - What are the usual HCM symptoms that show up in daily life? How are people able to monitor the condition?

[15:39] - Wendy shares what happened when she decided to lessen the amount of medications she was using.

[22:04] - How can you develop a trusting relationship with your medical team as a patient?

[24:56] - Wendy discusses SHaRe, new advancements in heart condition treatments, and the international push to contribute to research.

[30:27] - Who is part of Wendy’s support system?

[35:09] - How does Wendy approach talking about heart conditions with kids? She retells personal experiences with her own children to explain her mindset.

[39:07] - Wendy helps connect HCM communities across the country. Listen to Wendy describe how she gets communities to engage with each other.

[47:43] - Is it possible to manage safe exercise with a heart condition? What is the impact of including exercise in a heart condition journey?

[54:34] - What motivates Wendy to continue advocating for herself and others? Advocacy is what helps the community move.

[58:09] - How is the collective narrative of the heart condition journey being captured?

[01:04:03] - What are urgent challenges Wendy believes the heart condition community should be addressing now?

[01:09:48] - Can people adjust to life with a noticeable heart condition device?

[01:18:53] - Support education and advocacy in the heart condition space. Let’s build a community that takes care of each other.

Links/ Resources:

Heart of a Giant
Heart of a Giant Foundation (HGF)

Wendy Coe Borsari

https://heart-failure.net