A New Online Resource for Those Living with Heart Valve Disease

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The Alliance for Aging Research has launched a new website, LivingwithValveDisease.com, that offers educational resources about heart valve disease and the personal stories of those who live with it.

A new website, LivingwithValveDisease.com, offers educational resources, community, and ultimately, hope, for seniors and others who are living with heart valve disease.

Linda Kincaid, age 67, knew something was wrong. She constantly felt tired and had an irregular heartbeat. At first she thought it was just a part of getting older, but she soon found out it was much more than that. After going to the doctor, she received a distressing diagnosis: heart valve disease. Linda admitted she felt afraid about what might happen to her.

Linda is not alone. As many as five million Americans are diagnosed with valve disease each year. Valve disease involves damage to one or more of the heart's valves. While some types are not serious, others can lead to major complications—including death. Age is a major risk factor for most types of valve disease.

For those with valve disease, the burden can seem overwhelming. But a new website launched by the nonprofit Alliance for Aging Research offers educational resources, community, and ultimately, hope, for seniors and others who are living with heart valve disease.

“Today we are excited to launch the Living with Valve Disease website,” says Alliance Vice President of Health Programs Lindsay Clarke. “Stories like Linda’s are all too common, and that’s why we started this site: to offer seniors a place where they can learn more about their disease and share their thoughts and stories. Linda is living a healthy and full life thanks to the help of her family, health care professionals, and support community. We want others like Linda to learn from her story and from the wealth of resources out there on valve disease.”

The Living with Valve Disease website provides a one-stop online resource for valve disease patients and caregivers, with both original and aggregated content from a host of reliable sources. This content includes articles, podcasts, videos, and the stories of valve disease patients like Linda.

Linda’s story and the story of another valve disease patient named Nina Bamford were turned into videos produced by Adam Pick, a nationally known advocate for valve disease awareness and founder of HeartValveSurgery.com.

“As a former heart valve disease patient, I faced tremendous challenges. But with the support of my health care professionals, family, and friends, I made a full recovery,” says Pick. “My experiences led me to share my own story and to create a place for others to share theirs at HeartValveSurgery.com. It has been my privilege to partner with the Alliance to tell the stories of Linda and Nina. I look forward to sharing their inspiring stories to reach as many people as possible who face the overwhelming prospect of heart valve disease and to help them know they aren’t alone. There is a huge community of others just waiting to give them the same resources, love, and support they—and I— received.”

To encourage the community aspect of LivingwithValveDisease.com visitors are welcome to submit their own stories and to comment on site content.

Support for the Living with Valve Disease website came from Every Heartbeat Matters, an initiative of the Edwards Lifesciences Foundation that seeks to reduce the global burden of heart valve disease by supporting the education, screening, and treatment of one million underserved people by 2020.

“We are grateful to both Adam Pick and Edwards for their partnership,” says Clarke. “Adam’s story has been an inspiration for thousands of people with valve disease. And Every Heartbeat Matters is making a worldwide impact through its support of endeavors like ours. We look forward to continuing to work with both of them as we get the word out about our Living with Valve Disease site.”

About the Alliance for Aging Research
The Alliance for Aging Research is the leading nonprofit organization dedicated to accelerating the pace of scientific discoveries and their application in order to vastly improve the universal human experience of aging and health. The Alliance was founded in 1986 in Washington, D.C., and has since become a valued advocacy organization and a respected influential voice with policymakers. Visit http://www.agingresearch.org for more information.

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Noel Lloyd
@Aging_Research
since: 09/2011
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