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Dancing Through Hypertrophic Cardiomyopathy: Raising Awareness For HCM

LAKEWOOD, OH — At seventeen my life was already mapped out. I would finish high school, attend The Juilliard School, join The Paris Opera Ballet Company and live happily ever after. I was dancing almost 7 days a week at that point. My entire existence was balancing trigonometry homework in between stuffing my pointe shoes with lamb’s wool. I almost didn’t have time to think about boys – almost. I had big dreams. Nothing was going to stand in my way.

The previous few years had been whirlwind for me. I was so overworked honing my craft that I would have sporadic episodes of passing out at dance class. The teachers dismissed it as pure exhaustion or dehydration. I began noticing I was becoming extra tired or out of breath in these classes. Consistently, I could barely get my heart to calm down after performing a routine. It wasn’t overly surprising to me when I had trouble in my school gym class running the track. I felt so winded. I couldn’t catch my breath and started dragging behind. The coach yelled insults at me hoping it would motivate me to pick up my pace.

I didn’t know it at the time, but my life could have ended during one of those dance classes or gym classes. The leading cause of death in student athletes is sudden cardiac arrest. I could have died at the hands of my teachers or coaches simply because they had no idea a healthy looking athlete like myself was capable of concealing this horrible deadly disease. And I am not alone. In fact, I am one of the rare few who are diagnosed pre-mortem.

I ended up at the nurse’s office several times over my high school career. The nurse excused my aforementioned symptoms and even some additional swelling I had, looking at my dancer’s body and thinking I was exhausted from my schedule, or that I was hoping for an excuse to take a nap during school. I don’t blame her though. No one taught her or any of my teachers that a genetic heart condition was a possibility for someone my age. I looked completely normal despite the lingering death sentence looming inside my body. My mom took me to an urgent care clinic many times after seeing the school nurse, where I was misdiagnosed with diseases ranging from asthma to chronic fatigue syndrome.

Everything came to a climax one night after school and ballet class. I was suffering from edema so badly that my face was hardly recognizable. After consulting WebMD, like we all do, I attributed the swelling to the sodium in the extra-large helping of mashed potatoes and gravy I had on my way to dance class that day. I followed the online instructions to increase my water and lower my salt intake. The next day I was exceedingly swollen, and collapsed on the way to the bathroom. My mom rushed to my side, I told her “something isn’t right, I need a doctor.”

I was rushed to the emergency room with 20 lbs of swelling from extra water on my body. This was a rare and relatively unknown symptom of my underlying heart condition, and it wasn’t until a resident at the Cleveland Clinic thought he heard a heart murmur that they even considered looking at my heart. Several more doctors were brought in to confirm the murmur. I felt like a human seashell with the sound of the ocean inside me, having all these people listening to my chest.

Over the next few hours I was subjected to a battery of tests without anyone really telling me what was going on. Afterward I was visited by Dr Lever, a world-class cardiologist and heart specialist. He got right to the point and asked me if anyone had ever told me I had a heart murmur before? “Only earlier today”, I said. He then proceeded to tell me I had a heart condition called hypertrophic cardiomyopathy. My mom literally passed out from shock. They put her in the hospital bed adjacent to mine, and when she recovered he explained to both of us what HCM was, and how my activities with dance might be limited. Limited dance ending up being just the beginning of my new life with HCM.

If you’re old enough, you might remember Reggie Lewis and Hank Gathers, whom both died on the court from undiagnosed, underlying heart conditions. Hank Gathers’ death in 1990 shocked the college basketball world when he collapsed and died on the court. Three years later, Lewis suffered a sudden cardiac arrest at age 27, while practicing for his next season with the Boston Celtics. Both of these top flight professional athletes, like me, had HCM. Unfortunately they didn’t know until it was too late. And these two men just scratch the surface of an issue that for the most part flies under the radar for the majority of people. We have a silent killer on the loose and an epidemic on our hands.

How much of an epidemic? Consider the following:

  • It is estimated that more than 2,000 young people die every year of sudden cardiac arrest.
  • While it can strike those who are sedentary, the risk is up to three times greater in competitive athletes.
  • Sudden cardiac arrest is the number one cause of death in student athletes.
  • According to some experts, a high school student dies of cardiac arrest as often as every three days.*
  • Of these roughly 2,000, at least 72% could have been saved through simple symptom recognition and even more than that number through heart screenings.
  • One of every one hundred kids has an undiagnosed and undiscovered heart condition.

So what do we do? How do we take all these statistics and make sure that we keep as many of our children from being one? How do we stop these senseless and sometimes preventable deaths?

I would like to work from both a ground up and the top down approach on this issue. Seventy-two percent of young people that prematurely pass away from sudden cardiac arrest had recognizable symptoms that went unnoticed. Seventy-two percent of these kids were symptomatic!!

So here is where we can make a change. Let’s educate our coaches, teachers and parents to recognize the symptoms of underlying heart conditions. My dance teachers and PE coaches did not know that when I was passing out and not able to catch my breath, that I had a ticking time bomb beating in my chest. We can change this. We can save lives of student athletes.

I am working on legislation in my home state of Ohio that would require coaches, educators and parents to understand these symptoms of underlying heart conditions. For example, fainting during exercise is the #1 warning sign. I fainted multiple times and my coaches and teachers attributed it to dehydration or heat and I was not removed from the practice or event. No one knew to look for a heart condition. My vision is to bring this legislation to Ohio, and then work on nationwide, sweeping legislation to impact and potentially save those 72% of young people.

At this very moment we have law on the books in all 50 states that require youth coaches and administrators to remove athletes from participation when they have “concussion-like” symptoms. During 1984-1991 four athletes died from a concussion. During 1992-1995 a total of 17 deaths were described **.

Last year thousands of students died from sudden cardiac arrest. We are protecting our kids’ heads but what about their hearts? What about these thousands of families that lose a child every year? We can prevent a significant number of these tragedies through education. I am proposing a budget-neutral bill in Ohio that would require students and parents to read and sign a pre participation document that sets forth the warning signs of SCA, coaches to watch an 8 minute educational video annually, sign off on understanding the symptoms of an undiagnosed heart condition, and commit to pulling a child showing those symptoms from exercise or competition.

This small piece of reform in our schools can save many of these student athletes that are symptomatic before they have a fatal cardiac incident. Versions of a bill just like this has already been passed in nine states and we need to make Ohio the tenth. Together we can save these young athletes and students like myself.

I walk in these kids' shoes. I have a heart disease that could have taken my life had it not been accidentally found. I was lucky, but we can change things so that other young people won’t have to rely on luck. I encourage you to write your state senators and representatives. (If you live in Ohio, write Senator Cliff Hite. I’m working with him leading our charge in the Ohio State Senate.)

I want young people to know just because you’re diagnosed with HCM, it doesn’t always mean you have to give up your passion for sports. Most conditions these days can be treated, and doctors will work with you to find out your limitations. Many are able to get back into sports after treatment. We are not captives of our condition or circumstance. I have committed my new life to making a difference in the lives of others. My doctors, their diagnosis, heart surgery and my ICD have given me the most precious gift I could ask for, time.

With the time I have been given and the second life I have discovered, there is an even greater sense of wanting to leave a legacy of love and service.

Mother Theresa said, “We can do no great things, only small things with great love” and my dream is to live a second life full with small things done for others with immense love. You are stronger than you think. You can make a difference exactly where you are, with exactly what you have been given.

Written by Lindsay Davis

Lindsay Davis was diagnosed with hypertrophic cardiomyopathy (HCM) at age 17. She has made a commitment to use her experience with a deadly heart condition to educate and create awareness around young people and the heart issues facing her generation. She won the crown of Miss Ohio United States in 2011 and used her platform to educate and advocate for heart health. Through her work locally and nationally, Lindsay has become a leader in raising awareness for both diagnosed and undiagnosed heart conditions in student athletes and young people. She is on the board for the Heart Hope Foundation, and a national speaker for heart related charities and causes. Some of her accomplishments include keynote speaking at Ohio Senate events and campaigns, and at Simon’s Fund and Heart Hope Foundation fundraisers. Lindsay received the 2015 Courage Award for outstanding accomplishment from the Heart Hope Foundation and was honored by former president George H.W. Bush as a Point of Light award recipient for her volunteer and philanthropic accomplishments in her community and the field of heart health.

Story Credit: http://patch.com/ohio/lakewood-oh/dancing-through-hypertrophic-cardiomyopathy-raising-awareness-hcm