Afib Survivor: Seeing the Disease from the Eyes of the Patient

In last month’s blog, I wrote about how the Heart Rhythm Society’s 32nd Annual Scientific Sessions will focus on advancements in technology. While such developments are of great interest to us as clinicians and scientists, it’s also good to keep in mind that they are only the means to a more important end – a better quality of life for people with atrial fibrillation or other heart rhythm disorders.

For me personally, what’s most gratifying is when patients who have had ablations tell me they feel like they’ve been given their lives back. At the CARMA Center, we’re giving our patients the chance to celebrate these experiences on AfibSurvivor.com.

This section of our new web site lets patients such as Michele Straube create profiles to share their Afib survival story with others. In this way it connects survivors with current patients and builds not only a greater understanding about atrial fibrillation, but a wider and more educated support group for those who have been diagnosed. It is a way for us to continue educating the public about atrial fibrillation and its health risks, especially the risk of stroke, and provide more insight into the research and technology at CARMA. The site connects users to information on our Atrial Fibrillation Awareness Campaign, where they can get dates and locations of the free screening and educational events we are offering in states surrounding Utah, including Idaho, Wyoming, Washington, Arizona, Nevada, California and Colorado.

Michele has also contributed a blog to AfibSurvivor.com, titled: “Into the Heart of the Alps for Afib Awareness.” Beginning in June, she plans to hike the 1,500 mile Via Alpina, starting in Monaco and ending in Slovenia, during the summer months of the next four years. Her grand adventure, which is sponsored by CARMA, is a platform for promoting Afib education and fundraising opportunities for Afib Research. As she writes in her first post, she’s also doing this “to celebrate my new-found heart health and to let the world know that atrial fibrillation exists, it’s dangerous, and it can be cured.”

As a reminder of how this disease – and its cure – can affect people’s lives, let me share with you this last excerpt from her blog:

“I can ride a bike again for the first time in 20 years. I am taking adult ballet lessons. I am walking uphill virtually every day while carrying on a conversation. Last weekend, I finished a 25K trail race and loved every step of it. No more dizziness. No more wheezing. No more ‘out of control’ heartbeats. Life is SO GOOD!”

Nassir F. Marrouche, MD is the Executive Director of the Comprehensive Arrhythmia Research & Management Center, Director of Electrophysiology Laboratories, and Director of the Atrial Fibrillation Program at the University of Utah School of Medicine, Division of Cardiology.

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