Lindsay exits the Uber with frustration and stares down the block, furious with the insensitivity of the driver. First, she had to run down the car as it was pulling away, luggage in hand, and now he insists on dropping her off a block from her apartment. As she begins to walk fatigue takes hold. She feels it in her body, the stress that comes with over-exerting her most essential yet fragile organ–her heart.
Lindsay lives with hypertrophic cardiomyopathy or HCM, a genetic heart condition that often makes getting from one place to another a challenge. So, when a city driver refuses to drive an extra block or drop her off precisely at her destination, she is faced with draining her energy reserves for the day. This is unfortunately all too common in Lindsay’s experience. Time and time again people assume she is healthy and don’t take her requests seriously.
“I think it's important for all people to understand that everyone is fighting a battle that you know nothing about and there are people that are walking around with these invisible illnesses, whether they're physical or whether they deal with mental health.”
“I'm incredibly symptomatic, so walking is pretty much it for me,” she explains. With HCM, parts of her cardiac muscles become over-enlarged and begin to obstruct blood flow, meaning the heart must work harder to keep circulation going throughout the body. The condition affects everyone differently, yet tends to be progressive with age. For Lindsay, she cannot afford to ignore the symptoms. “I'll be walking down the street going to the grocery store and there will be the slightest incline in the sidewalk, and I can feel it, and I'll start getting completely winded and out of breath.”
Despite these challenges, Lindsay’s struggle remains largely invisible to her peers. “Sometimes when you look at someone, you might make a quick judgment about them and think they're healthy,” says Lindsay. “You think that they're just asking for a wheelchair at the airport because they don't want to walk, but they just had heart surgery.” Time and again she is faced with others making such assumptions about her, but instead of just getting frustrated, she has taken the challenge to task as an HCM advocate. “I think awareness is really important. I think it's important for all people to understand that everyone is fighting a battle that you know nothing about and there are people that are walking around with these invisible illnesses whether they're physical, or whether they deal with mental health.”
Lindsay has made a lasting imprint on HCM in her home state. Lindsay’s Law or SB252 was passed by the Ohio legislature and signed into law in 2017. It directs several statewide organizations including the Department of Health and Education, to inform athletes about the signs and dangers of sudden cardiac arrest, a leading killer in young athletes.
“Lindsay's Law educates coaches, parents, and the students themselves on the signs and symptoms of a heart condition,” she attests. “And if anyone has symptoms, they're removed from play. There's also mandates for coaches. If there's an emergency, they know what to do. They know how to perform CPR.” Lindsay has met a teenage former athlete who was saved by his coach’s quick actions to stop a cardiac event in Ohio–a result of Lindsay’s drive to raise awareness and have a lasting impact.
Recently, she made a trip to Ohio, where she took part in an initiative to open a new hospital with a care center for HCM. “It’s in this very rural part of Ohio, and 70% of the patients there are Amish.” She shares a common mutation with the Amish that is known to lead to the development of HCM, called the myosin binding protein 3, or MYBPC3 for short. It is yet another initiative that she has worked on over the last several years.
“Chances are you know someone with HCM and they might not know that they have it,” she explains. The American Heart Association estimates that about 1 in 500 people have the disease.
To further increase her reach and influence, in August 2024, Lindsay published her first book, Lindsay’s Big Heart. The fully-illustrated children’s book was co-written by Dr. Srihari S. Naidu, a cardiologist and expert in HCM. “It’s loosely based on my journey,” says Lindsay. Her hope with the book is to demystify the diagnosis for others, especially girls. “I want to give that to families and to children. I want to give them comfort through this book.”
The book mirrors many aspects of Lindsay’s life story. As a girl in Ohio, she fell in love with dance. Lindsay dreamed of attending Julliard and becoming a professional ballerina. Her practice schedule increased until she was dancing seven days a week. “I just loved it,” she remembers. “I loved being on stage and being able to bring joy to people.”
A dedicated athlete, Lindsay couldn’t understand why she struggled at times, in gym or dance class, to keep up with others. “I couldn’t get my heart to calm down,” she recalls. She started passing out in gym class. “Everyone was just telling me, ‘You didn't eat today, did you? Why don't you have some water? Why don't you sit in the shade?’ Everyone just thought it was that it was too hot out or that I was dehydrated. No one around me thought that I could be concealing something that was deadly, like a heart condition."
Lindsay and her mother attempted to address the problem for years, taking her to doctors and receiving a series of misdiagnoses. She was told she had asthma and got an inhaler; she was told she was dehydrated or suffering from chronic fatigue syndrome. Lindsay and her mother knew something else was behind her health issues but they were unable to find a doctor who would take her complaints seriously. “My diagnosis took years,” explains Lindsay. “I was misdiagnosed many times basically because of how I looked.”
Things came to a head when Lindsay was 17. One day she felt especially tired and her body swelled with water. She went to dance class and felt like she couldn’t move, like she was “dancing through quicksand.” She returned home and felt very unwell. “I started walking down the hall. I passed my mom's room and I told her I wasn't feeling well, and I collapsed.” She lost consciousness and her mother rushed her to Cleveland Clinic.
In the ER, Lindsay noticed a new level of attention. Suddenly, she had more doctors than she had ever seen in her life listening to her chest. “I felt like a seashell,” she reflects. Soon, the reality that something was going on with her heart came into focus. “After many hours and many tests, there was a cardiologist that came into my hospital room and he just immediately said, you have a heart condition called hypertrophic cardiomyopathy.”
The news sent a shock to Lindsay’s mother, who promptly passed out and doctors put her in the bed next to her daughter. Lindsay was so worried for her mother that she forgot about her own issues. Neither Lindsay nor her mother had ever heard HCM before, nor had any clue what it meant for Lindsay’s future. They learned that her HCM, a progressive condition, was a serious matter that signaled a monumental change on the horizon.
In an instant, Lindsay’s dreams of becoming a ballerina vanished into thin air. Doctors instructed her to stop all strenuous physical activity. Dance was fully off the table. “I didn’t know what to do. I had been training my entire life.” At the time of her diagnosis, the standard recommendation was to stop all physical activity. “Now, we have new guidelines,” informs Lindsay. “It’s actually healthier to exercise a little bit with HCM. You just have to work with your doctor to figure out what activities you can do.”
After her diagnosis, Lindsay had an ICD, a small device that can detect and stop arrhythmias, implanted into her chest to protect her from future cardiac episodes. It was her first surgery and a humbling experience. Even more humbling was the fact that since then, she has had her ICD replaced twice due to malfunctions. The remaining scars are the most visible sign of her HCM.
Undoubtedly, there were real challenges for Lindsay. In her twenties, her HCM and the buildup of extra tissue in her heart began to slow her down in ways she could have never imagined before diagnosis. “I went from being a ballerina that was dancing seven days a week to not being able to walk up the incline of a sidewalk.”
As Lindsay came to terms with her disease and the lifestyle changes that it required, she tried to find a new life path. Inspiration came to her from the couch. “I was watching TV and there was something on about a pageant queen who was deaf,” she recalls. “And I thought that was absolutely remarkable, that a lot of people might have judged her, thinking she wasn't capable of the same things that we're all capable of, that her disability might hold her back, but I loved that she was out there on that stage and competing and showing that nothing held her back, not even her disability.”
Lindsay felt empowered to try her hand at a beauty pageant. In 2010, she began preparing for the pageant to crown the next Miss Ohio. “I wanted to do it for HCM. I wanted to do that for all those little girls that had heart conditions, or any other medical condition, that thought that they were not capable of doing the same thing.” She endured weeks of rigorous pageant training to prepare for the contest.
Lindsay won the pageant and became Miss Ohio in 2011. The title immediately opened doors to share her advocacy work with legislators. “I got to meet all these politicians and influential people in Ohio,” she says. “And I got to talk a little bit about what Ohio needed to better protect children [from heart disease].”
This laid the groundwork for drafting and eventual passage of Lindsay’s Law in 2017. It was a major stepping stone in Lindsay’s career as well as the community of people affected by HCM. During the COVID-19 pandemic, Lindsay became especially active online, speaking out against injustices in the healthcare industry and working on a successful initiative to get racism classified as a threat to public health via the American Medical Association. Then, in 2023 Lindsay was honored at the Heart of Cleveland Guiding Values Awards with the Live Fierce, Stand for All Award for her work as a patient advocate.
These days, Lindsay is regularly commuting from NYC to Washington DC to meet with lawmakers about furthering initiatives designed to protect heart patients. In December 2024, her hard work paid off as congress passed the HEARTS Act1, sponsored by New Jersey Congressman Frank Pallone.
Still, Lindsay has her good days and her bad ones. It is the reality of living with HCM. She counts herself as lucky: to have gotten her diagnosis, to have an ICD, and to have supportive friends and family who have helped her through the tough times. “The uncertainty of what comes next, is something that I always fear with this disease,” she says. “It's something that is always in the back of my mind.” Heart failure, due to obstructive HCM is a major concern and ultimately, Lindsay must face the long-term consequences that come with her diagnosis. However, with strong allies and a nothing-is-impossible attitude, she remains poised to reimagine the image of the sick person, to show the world that a woman with HCM can do more than many ever thought possible.
