By Mellanie True Hills
September is Atrial Fibrillation Awareness Month. A lot of folks may ask: Why do we need a month devoted to afib? Or, even, what is atrial fibrillation, anyway? Afib is an irregular heart beat that can lead to serious complications, such as dementia, heart failure, stroke, or even death. Too many of those affected by the condition don’t realize that they have it, and many who have it don’t realize the seriousness of the affliction. And all too often, healthcare providers may minimize the effects of the condition.
Afib month is also a way to help patients and healthcare providers learn more about this complex condition. Why is such knowledge important? In addition to stroke prevention, such know-how can improve the quality of life for those suffering from afib. Surprisingly, those who live with afib have a lower quality of life than those who have suffered a heart attack. And, unfortunately, some healthcare providers may not know about treatment options that can essentially put a stop to the condition.
For those who have afib, information about the ailment and treatment options are imperative. You see, the longer someone has afib, the more likely they will convert from intermittent afib to being in it all the time, which means it’s more difficult to stop or cure.
StopAfib.org has helped lead the awareness campaign. To me, this mission is intensely personal. Like those millions impacted by afib, I had the condition, too. Because nearly 35 percent of all afib patients have strokes, I lived with the constant worry of a stroke. I developed blood clots and had a close call with a stroke on my first afib episode. And because blood thinner medications didn’t work for me, I felt like I was a stroke waiting to happen.
In 2005, I discovered a procedure that could stop my afib and remove the source of potentially stroke-causing blood clots. On September 13, 2011, I celebrated being afib-free for six years. Because of my experience, I couldn’t stand on the sidelines and watch others suffer and have strokes. I had to do something about it. That’s why I started StopAfib.org, a non-profit patient advocacy organization and website to provide information and support for those living with atrial fibrillation.
The years of work and effort that I’ve put into StopAfib.org are to help those who also suffer from this condition. Through sharing information with patients and healthcare professionals, the organization has made great strides in the past four years. One of those great steps was having September declared Afib Month. First, StopAfib.org had the month registered with Chase’s Calendar of Events. Then in 2008, I discovered that some other organizations were interested in getting it declared nationally, so we joined together with a number of professional and patient organizations led by the American Heart Association and asked Congress to make it official. And on September 11, 2009, the U.S. Senate declared it Afib Month.
StopAfib.org, which began in my home office as a simple idea, has spread and continues to help afib patients worldwide. Not only patients, but healthcare professionals have benefited from our resources, webinars and presence at medical symposiums as well.
Dr. Nassir Marrouche, an electrophysiologist in Salt Lake City who is the executive director of the Comprehensive Arrhythmia Research and Management Center at the University of Utah, recently shared some kind words about how the organization has helped spread the word to patients and the medical community:
“StopAfib has been a powerful voice in raising awareness about atrial fibrillation, a common but still little known condition that greatly increases the risk of strokes and disrupts the lives of millions,” says Dr. Marrouche. “StopAfib.org also created Atrial Fibrillation Awareness Month, which we enthusiastically support. Because of the organization’s efforts, thousands of people are now getting diagnosed and treated for a disease that often occurs without any symptoms and may lead to a stroke.”
Yet, afib still seems to be the most common, yet unknown condition. It seems nobody knows about it unless they or a family member had it. Many people aren’t diagnosed for years, and often not until after they have had a stroke or two, or even three. This knowledge gap is why StopAfib.org along with other organizations asked Congress to recognize the concerns of the afib community. They listened. The U.S. Senate approved a resolution to raise the priority of afib in the existing research and education funding allocation process. The resolution does not seek any new funding. The U.S. House of Representatives is considering a similar measure, House Resolution 295, and singer Barry Manilow, who is also an afib patient, just asked Congress to support it.
Afib received this attention because it has a real physical and economic impact on our country, families and most of all on patients. We can focus on preventing strokes or paying for their devastation. Prevention is much cheaper for Medicare, for families, and especially individuals. Lots of those with afib need some place to turn for more information. That’s why Stopafib.org continues its mission. We know that there are other patients out there who can improve their lives, save lots of money and ease their minds.
Early awareness is vital, not only to avoid strokes but also to regain lives that have been hijacked by afib. We now know that patients have the best chance of success, or at least having their afib burden diminished markedly, if they have a procedure within two or three years of diagnosis. With Afib Month, we hope that patients and healthcare providers will consider sooner treatment.
You can help, too. This month, forward a link to someone you may know who could have the condition. Attend an afib awareness raising event or webinar. Or share the StopAfib.org site with some patients. Something as simple as that can help someone become free of afib.
• Check out our online Get Started Learning About Atrial Fibrillation Guide (http://stopafib.org/newsitem.cfm/NEWSID/277/atrial%20fibrillation%20patient%20information/educate%20afib%20caregivers/)
• Share your afib story, or get or give afib support, at the StopAfib Discussion Forum (http://forum.stopafib.org)
Mellanie True Hills is the founder and CEO of StopAfib.org, a non-profit patient-to-patient resource for those living with atrial fibrillation. She also blogs at the Atrial Fibrillation Blog. (http://atrialfibrillationblog.com)
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