By Lindsay Davis
When you were 17, what did you consider your greatest threat? For me, it was receiving a failing grade, not getting into the school I aspired to or falling behind on learning new choreography in ballet class. At the time, I deemed these the worst things that could possibly happen to me. Then, one fateful night, I collapsed and learned my heart ceased to function properly.
My entire life I had been a ballerina. It was all I knew. I almost felt as if everything else I did was just “filler.” Upon graduation, I had planned on attending The Juilliard School and then joining the Paris Opera Ballet Company. I had pushed my body to the edges of extreme conditioning almost every day of the week. As a student athlete, I was the epitome of health. That’s why to my mother, it was paradoxical that I had started to pass out and experience shortness of breath, edema, fatigue, light-headedness and the inability to calm my heart beat after routines.
My dance teachers and gym coaches at school shrugged these ambiguous symptoms off as a lack of conditioning, despite my rigorous practice schedule. They told me to eat and drink more water to combat dehydration. My mom took me to numerous urgent care centers where physicians were ignorant to the notion that even young, highly trained athletes can conceal a dangerous health condition. I was misdiagnosed with asthma, and prescribed an inhaler. I focused on dance and ceased reporting my symptoms to those around me.
I still look at the night of my diagnosis as one of the greatest gifts I have ever been given. I left dance practice exhausted and feeling like all of the water I drank that day was stuck to my body. It was a phenomenon I had intermittently experienced over the previous few years and regarded as a new normal.
That particular night, I had 20 lbs. of water that had accumulated on my body over the previous couple of days. My hands, limbs and eyelids were swollen to an unrecognizable state. The skin around them so tight I felt as if it would burst at any second. My chest felt heavy, like I fell asleep with a heavy textbook on top of it and couldn’t get all of the air inside of my lungs that my body was so badly craving. I walked down the hall mustering a faint “I don’t feel very well” to my mom in the seconds before my collapse.
I was rushed to the Cleveland Clinic and identified as having a congenital heart defect (CHD) known as hypertrophic cardiomyopathy (HCM). This condition puts me at the greatest risk of experiencing sudden cardiac arrest (SCA). With this diagnosis, I can treat the symptoms, and work with my cardiologist to minimize the risks associated with having HCM, such as implanting an S-ICD (Subcutaneous Implantable Defibrillator) to mitigate my risk of SCA and taking medication to control the strength of my heartbeat and water levels. Unfortunately, not all athletes are as “lucky,” and not all diagnoses provide this opportunity.
Our news headlines are increasingly inundated with stories of young athletes who were diagnosed when it was far too late. They collapse on the field or court and are unable to be resuscitated. I later learned that according to the Journal of the American Board of Family Medicine, about 72% of these young athletes who had passed away, had previously reported symptoms like I’d experienced. I found this disparity alarming.
Some HCM patients can continue their prior activity level once diagnosed. Some have restrictions placed. I was the latter. I had to give up ballet due to my HCM.
For a while I felt lost in my disease. I felt pain, anger and sadness that the same disease that took away my dreams was continually taking the lives of other young people. It didn’t feel fair to me. With each headline I read, I wondered why little was being done to help these children before it was too late, and then I realized I could be one of the catalysts they needed for change.
I started my journey of patient advocacy at the doorstep of a pageant. The idea to enter was an impetus of watching a pageant broadcast where a contestant who was deaf competed. I found it empowering that she was increasing visibility for her condition. She was inspiring other young girls to go after their dreams and not look at their disabilities as impairments or limitations to what they could do. I wanted to show other young girls the same and gain a platform to speak out about my heart condition and the disparities in healthcare. I ended up winning the title of Miss Ohio in 2011.
I used my reign to raise awareness for HCM and SCA. I’ve campaigned legislation in several states to make CPR (cardiopulmonary resuscitation) and AED (automated external defibrillator) training compulsory in high schools. I championed “Lindsay’s Law,” which protects student athletes from sudden cardiac arrest through awareness and educating coaches, parents and athletes on the signs and symptoms of an underlying heart condition. UN panels and international medical congresses have invited me to speak on these causes, and publications such as USA Today, Sports Illustrated and the BMJ have allowed me to speak out and raise awareness through their mediums. I looked for as many opportunities to turn a sad story of a girl losing her first love and passion in life into a narrative of triumph and persistence.
I’m excited to share things I’ve learned along the way as an HCM patient and patient advocate over a series I teamed up with Mended Hearts to produce. We live in a digital world where there is a lot of medical information you can find online.
I hope to inspire you to take charge of your health diagnosis and become an expert patient involved in your own treatment. I have learned that the deepest comfort after diagnosis is knowledge and understanding.
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