Long QT Syndrome: Not a Setback, but an Opportunity

Long QT Syndrome: Not a Setback, but an Opportunity
By: Brooke Powell

August, 2005 is a time I will never forget. My sister went to our family doctor for what we thought was going to be her routine sports physical so that she could participate in cheerleading. During the physical Dr. Morris listened to my sister’s heartbeat and we noticed she listened for a very long time. Dr. Morris removed the stethoscope from her ears and said she was hearing a little irregularity in my sister’s heartbeat that she had never noticed before and requested that she go for an echocardiogram.

My sister ultimately ended up needing to consult with Dr. Cottrill, a pediatric cardiologist. Dr. Cottrill was suspicious that she had a genetic heart arrhythmia called Long QT Syndrome and once the blood work was sent to the genetic lab, the diagnosis was confirmed. Because the disease is genetic, the rest of the family had to be tested and it was later concluded that my father and I also had Long QT Syndrome.

We learned that Long QT Syndrome can be a very serious arrhythmia, potentially leading to cardiac arrest or even sudden cardiac death. Since none of us had ever been symptomatic, Dr. Cottrill allowed us to continue to participate in cheerleading, tennis, and clogging but we would be required to take a daily medication called Nadolol that keeps our heart beat at a slower pace. Education about symptoms of dizziness, fainting, and rapid heart rates was necessary as well as knowledge of certain medications and foods to refrain from consuming. Knowing that our hearts already had one strike against them my family made it a priority to make sure we did all we could to keep our hearts healthy; but I wanted to share that message with my community. Since obesity rates in children have tripled and heart disease is the number one killer of men and women, I have made it my mission to educate and motivate others to be heart healthy

I began my mission by contacting Mike Turner at my local chapter of the American Heart Association to find ways I could volunteer. It was from this point on I needed to fasten my seatbelt because I have been involved in numerous areas with the American Heart Association. Some of the major events that I have had the opportunity to participate in include working the advocacy table at the Heart Walk, fundraising and modeling for the Go Red for Women Luncheon, and I continue to be a member of “You’re the Cure”. As a member I receive emails about needed legislation and information about the proper elected official I need to contact to ask for their support.

I have also had many chances to share my personal story of being a heart disease survivor. I was featured in a video that was broadcast at a Lexington Legends baseball game and at the Junior League Horse Show as well as articles in Tops in Lex and Underwired magazines. I have also taped a video that may be used at a later date at sporting events to raise money using text messaging.

My platform “Straight from the Heart: Raising Awareness of Heart Health,” which I use as a Miss Kentucky contestant, is a crucial part of letting my voice, and story, be heard. Because of my work with the American Heart Association and my commitment to raising awareness, I was very fortunate to be chosen as the recipient of the Heather French Henry Quality of Life Award at the Miss Kentucky Pageant in July, 2012. Receiving this prestigious honor was a momentous event in my life and validated my belief that heart health awareness is of major importance in our society. I am so happy to be making a difference.

I am forever thankful that I am able to be educated about my heart condition. Many others do not know about conditions such as mine until it is too late. My condition has impacted many different aspects of my life, whether it is my diet and exercising, or my dedication to making my voice heard by all. While many may see such a diagnosis as a setback, I see it as an opportunity. It is an opportunity to make a difference in the lives of others because every life is precious, every life is worth it, and every life depends on it.