Growing up I suffered from frequent fainting spells and would talk about my heart “feeling funny” while playing competitive sports. I was a happy and healthy kid who didn’t complain much, so my mom immediately took me to a cardiologist when I first mentioned this. A few appointments and EKGs later, I was told I was just a “stressed out teenager and my heart was fine”. Naturally, I started thinking that it was all in my head. I believed the doctor and lived for years assuming they were correct.
Fast forward to December 2012 – a day still vivid in my memory. I was 17 years old and this was the last appointment before my implantable cardioverter-defibrillator (ICD) surgery. It was the day that I held a pacemaker in my hand and came to terms with the reality that had quickly unfolded with my new diagnosis of Long QT Type 2, a form of Sudden Arrhythmia Death Syndrome (SADS). If left untreated, this disease can be life threatening and lead to a sudden cardiac death. It turns out I wasn’t a stressed out teenager and the actual issue was this rare heart disease commonly triggered by exercise.
I owe my cousin Marisa Peterson a lifetime of thanks. Without her dramatic and sudden discovery of her own Long QT Type 2, I may have never been tested and would have most likely found out too late. Thanks to Marisa, my entire family was screened for this rare disease and eight of us were officially diagnosed and treated. Seven of us now have ICDs that can defibrillate or pace our hearts to prevent death. I encourage those who can spread awareness for SADS to do so and if you discover that you have an inherited disorder, please communicate this to all of your family members. You could end up saving their lives the same way my cousin Marisa saved our family.
Living with a rare and chronic disease comes with its own set of special challenges, but with the correct diagnosis, great doctors, a strong support system, education on my disease, a healthy mental outlook, and a strong body/mind connection, I have been able to dramatically increase the quality of my life. I am joining the SADS community to advocate for and help others to reach the same point that I have reached. My relationship with this chronic illness has been anything but linear, yet I still wouldn’t change it for the world. A Long QT diagnosis certainly does not have to be a death sentence. I have grown more from my experience with this heart disease than I could have ever imagined. Shockingly, this is my first time publicly sharing my story. I truly hope this makes someone who is living with a scary diagnosis to feel less alone. It took me years to get to the point I am at in my health journey and I would love to help anyone out there going through something similar. It always feels great to have someone who understands what you are going through and we are lucky to have an established community like the SADS Foundation. Feel free to reach out to me at any time!