Date: August 4th, 2015
Heart valve disease involves damage to one or more of the heart's four valves. Valve defects can be there at birth (congenital) or develop later in life. It is very possible that you or someone you know has had valve disease, as it is common and affects as many as five million Americans each year. While some types are not serious, others can lead to major complications.
Fortunately, valve disease can usually be successfully treated with valve repair or replacement in patients of all ages. But when people are faced with a valve disease diagnosis, they may be scared and wondering where to turn for information, especially when considering treatment options. It is very beneficial to read about the disease and procedures and ask health care professionals any follow-up questions.
Another resource that can be helpful for people with valve disease is hearing from others who have had the disease. Health care professionals will be able to answer questions you have about the disease and how to treat it, but there is also value in the patient perspective. Knowing that others have shared the same experiences and have benefited from their treatment plans can serve as a reassuring encouragement for someone currently making decisions about their care.
Whether through in-person peer support groups or online forums, story sharing is an essential part of how we learn new information and communicate with others. With this in mind, the Alliance for Aging Research launched LivingwithValveDisease.org,a new interactive website for valve disease patients and their caregivers. On this site visitors can share, comment, and engage with others impacted by the disease. And by sharing stories—either as patients or loved ones—they can learn from and support each other.
Take the story of Nina Bamford, an 81-year-old woman who shared her experience with aortic stenosis. Nina recognized that her valve disease symptoms were taking a toll on her life and sought treatment. She underwent a transcatheter aortic valve replacement (TAVR) procedure and now has higher energy levels and can continue to do the things she loves. Nina exemplifies the fact that age is not a barrier to treatment and that everyone should have a chance at a better quality of life.
In addition to interactive story sharing, LivingwithValveDisease.org houses a wide range of original and aggregated educational resources and materials. It is our hope that these resources will empower visitors to be active, informed patients and caregivers and to find comfort in the fact that they are not alone in their valve disease journey. Visit the site to discover more patient stories and share your experience today!