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Not Just Surviving, but Living with Long QT

October 7, 2016 / connectedbyhearts / Heart2
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When initially diagnosed with Long QT Syndrome 1, I was a freshman in high school, a varsity cross country runner, a club soccer player, and an heavily involved NJROTC cadet. All of that changed when I went to a seemingly inconsequential heart screening at my high school. There, I was given an EKG and, to my surprise, I was pulled away by the on-site cardiologist and told that I had a heart condition denominated Long QT Syndrome.

This was in October, and from then until December, when I had my first cardiologist appointment, I continued to act as though nothing had happened, living my life as normal. Once I had gone to my cardiologist reality hit me in the face, springing out with the news that this disease was going to completely alter my life.

The next year was a whirlwind of emotions, genetic testing, and my refusal to accept this interruption that had emerged within my life. My hope for a return to my previous lifestyle was shattered that next summer when we finally received the results of the genetic testing. From there we found out that both my mother and younger brother also had the disease. Until that point I had been completely restricted regarding exercise, but I began to be able to slowly increase my activity level, rediscovering my passion for dance, and allowing me to ascertain what was truly important to me.

This experience has challenged me, ultimately evolving my perceptions in an incontrovertibly positive manner. Through these challenges, I have been able to begin viewing the world from a different point of view, realizing that whilst I may not be as invincible as I once thought, the world isn’t as perfect as it once seemed to be. And these imperfections that strike a flaw into this romanticized reality that I once resided within has allowed me a glimpse into a more realistic point of view. I am stronger now, in a mental capacity then I ever had been before, a trait which will help me deal with the various trials and tribulations that life will throw into my path down the line, which, because of my diagnosis, I will be able to make sure I am able to encounter them, both the beneficial, and malicious.
—Julia

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