By Rachel Summer Small For Dailymail.Com
14:07 27 Jul 2024, updated 14:07 27 Jul 2024
Lindsay Davis, 38, was diagnosed with hypertrophic cardiomyopathy at 17The condition forced her to give up her passion of balletNow, the two-time state beauty pageant winner devotes her energy to activism
A former beauty queen from Ohio was dealt a devastating blow to her dreams of becoming a ballerina after getting a life-changing diagnosis in her teens.
Lindsay Davis, 38, fell in love with ballet barely out of toddlerhood, describing how much she loved bringing joy to people through performance.
‘It was a good feeling for me to be able to brighten someone’s day,’ Davis, from Lakewood, Ohio, told DailyMail.com, adding that she ‘enjoyed the challenge of it pushing myself against my limit.’
But for Lindsey, who avidly pursued ballet up through her teenage years, it turned out that her physical limit would end up being curtailed in a way she never saw coming.
At 17, after getting home from a ballet class, she suddenly lost consciousness.
Lindsay Davis, 38, was first diagnosed at age 17 hypertrophic cardiomyopathy (HCM), a condition associated with the thickening of the heart’s lining Prior to the diagnosis, Lindsay was an avid ballet dancer from age three years old, and dreamed of going to Juilliard
When she woke up in the hospital, her doctor had life-altering news: she had hypertrophic cardiomyopathy, and would no longer be able to physically exert herself without risking her life.
Hypertrophic cardiomyopathy, or HCM, is a genetic disorder affecting the inner wall of the heart, essentially causing it to thicken over time and impede blood flow.
It’s also the number one cause of sudden cardiac death in seemingly healthy young people, particularly athletes, in North America, according to American Heart Association.
About one in 500 people have a gene that predisposes them to the condition, according to American Heart Association – though it’s believed that many cases are never diagnosed.
Statistics aside, the news was an undeniable blow to Lindsay, an individual who’d dreamed of attending Juilliard for ballet.
‘My immediate reaction was denial,’ she described to DailyMail.com of the aftermath.
‘I didn’t want to take the medicines, I didn’t want to listen to doctors and parents telling me to give up the life I knew and loved,’ she admitted.
She’d had dizzy spells before, but people around her would chalk those up to things like dehydration or a need to eat something.
HCM makes physical strain fraught with danger, as it impedes blood flow and can easily lead to a heart attack Though the diagnosis was a major blow to a teenage Lindsay, she hasn’t let it stopped her from achieving a myriad of other goals
‘We now know that 72 per cent of the kids that you’re seeing in the media that are collapsing, are reporting these symptoms, but no one around them knows that it’s a heart condition,’ she said.
‘They’re like, “Oh, well, why don’t you sit in the shade?” “Here’s some water.” “Did you eat enough today?” But it’s actually their heart,’ Lindsay, whose personal experience meshes with the expertise she cultivated on the subject during more than a decade of activism, shared.
It took a second collapse after her diagnosis for her to finally come to terms with how ‘serious’ her condition was.
Not long after that, she was fitted with a combination of a pacemaker and an implantable cardioverter-defibrillator (ICD).
She later switched to the less invasive S-ICD, in which the wire is implanted subcutaneously.
Now, she’s on her third device, and second S-ICD, which they switch out periodically when the battery’s run out of the prior one.
If an irregular heartbeat is detected, the ICD jolts her heart back into a regular rhythm – a sensation she described as being ‘like a horse kicking you in the chest.’
When it happened once as she was crossing the street in New York City – with her first ICD – she described the sensation as ‘terrifying.’ Even so, it was also conversely reassuring, she added, to know that she could rely on it to save her life.
Recovering from surgery in the hospital, Lindsay was inspired by deaf beauty pageant winner to pursue pageants herself Lindsay went on to win Miss Ohio U.S. International in 2010, Miss Ohio United States 2011 – and was a finalist in Miss Ohio USA in 2010 and 2011 Using the momentum from her pageant wins, Lindsay dove into activist work on behalf of people suffering from HCM and similar conditions
While adjusting to a schedule without dance practice – after years of going as frequently as seven times a week – Lindsay began throwing herself ‘into different artistic endeavors.’
‘Painting, modeling, acting – anywhere I could express myself,’ she explained.
By her mid-20s, Lindsay, still craving the positive energy she felt when performing as a ballerina, decided to give pageantry a shot.
‘I actually was in the hospital, I had just had another collapse. They were implanting a pacemaker, and I was just recovering,’ she recalled.
It was then, from the hospital bed, that she saw a beauty pageant on television – and one of the contestants was deaf.
‘I was like, “That is so cool.” If I had had a role model, when I was first diagnosed, of someone out living these big dreams, and accomplishing incredible things, I wouldn’t have felt so different,’ she explained.
‘And I thought how amazing that was for all the little girls that had watched this pageant that had also been deaf and had seen this woman compete and it made them feel like they could accomplish the same things and not feel different.’
From there, Lindsay realized she could do the same thing for HCM, creating ‘awareness’ through advocacy, and gaining a platform through pageantry.
When it came to ‘little girls’ with heart conditions, ‘I wanted to be that role model for them,’ she added.
‘So I entered the pageant. I had a pageant coach that taught me how to walk, I had no pageant experience, they taught me how to walk, taught me all the little nuances of pageants and how to answer things,’ she explained.
And her plan was a success.
She went on to win two crowns in separate pageant organizations in her state – Miss Ohio U.S. International in 2010 and Miss Ohio United States 2011 – and was a finalist in Miss Ohio USA in 2010 and 2011.
And, as she’d hoped, she indeed used each year as the reigning queen to spread awareness about HCM and other heart conditions – being a mentor to girls in particular.
‘Throughout my reign, it was great to be able to connect with other little girls to speak about my experiences and, and talk about how I was still able to get up on that stage. Even though I was supposed to not be as physically active as the other contestants, and how the stress was really pushing my heart,’ she said.
‘But I was able to still accomplish it. And it just felt like a really big chapter that that I was writing.’
Riding the momentum from her beauty pageant wins, she’s also found success in modeling and acting, nabbing parts in shows and films including Entourage, Law and Order, Gossip Girl, The Hunger Games and Broad City.
Lindsay also found success as an actor, scoring parts in TV shows and films including Entourage, Law and Order, Gossip Girl, The Hunger Games and Broad City
All the while, Lindsay was championing specific legislation to bolster her cause, emphasizing she’d always intended to use the crown for a particular ‘good.’
‘A lot of people just want to win the crown. I wanted it for a purpose,’ she told DailyMail.com.
‘I wanted to have that platform to talk about these causes, to connect with members of the community. And I went on and I was able to start meeting with politicians in Ohio and tell them about this idea I had that could help diagnose kids with heart conditions, just like I had,’ she elaborated.
Her landmark achievement came in 2017 in the form of Lindsay’s Law.
The Ohio state legislation mandates that all school coaches, parents and students receive basic information about sudden cardiac arrest in athletes – including educational materials on symptoms and requires coaches to also receive CPR training.
In August 2024, Lindsay is due to come out with a children’s book, Lindsay’s Big Heart, meant to help children and teens reeling from a new HCM diagnosis
She’s also partnered with the American Heart Association to successfully push for CPR training mandates in dozens more US states.
Over the years, she’s given talks at universities across the country, and volunteered with the UN since 2018.
And, just this past week, she was in attendance as Ohio governor Mike DeWine signed into law a bill requiring every public and charter school in the state to have an automated external defibrillator (AED) on site as a potentially life-saving measure should a student collapse due to a heart issue.
Lately, she’s also been pushing for a ban on flavored tobacco, given its disproportionate appeal and subsequent negative health effects for young people.
And in August, she’s set to release an illustrated children’s book, Lindsay’s Big Heart, aimed at children and teenagers dealing with the aftermath of an HCM diagnosis.
‘The person I was right after diagnosis really relates to so many patients I’ve met. And I was really lost. I was really scared. I didn’t understand any of the tests that were going on. I didn’t understand the diagnosis, I didn’t understand why I had to take medicine, why everyone was fussing over me,’ she recalled.
‘And I wrote this book in order to help those children with the new diagnosis or help their families that might be confused or scared.’
Over the years, she’s also grappled with the paradox of living with a condition that could in theory turn life-threatening at any moment – while appearing to be the picture of health on the outside.
She recalled a specific instance when, just two days following a surgery, a gate agent treated her with skepticism for needing wheelchair assistance throughout the airport.
‘Because I was diagnosed at such a young age, and I present myself as someone very healthy-looking, it comes up a lot,’ Lindsay said.
Besides her physical and inner emotional journey with HCM, Lindsay has often had to deal with judgement from others who assume she’s the picture of health that she appears to be
‘Sometimes, it’s not even with surgery. With HCM, you don’t know how you’re going to feel that day. You could wake up and not even be able to walk across the room to turn your light on, just because you get so winded like you’ve been running a track all day,’ she described.
And it’s those exact times that she’s had to further weather the additional stress of people’s judgment when it comes to her ‘invisible illness.’
‘It’s hard for me, because I’ve had so many instances where people will look at me and judge me. Like, “You don’t need a wheelchair, why would you need a wheelchair?”‘ she said.
‘Or they’ll give me the wheelchair and then they’ll make me feel like I’m just this girl that didn’t want to walk or something.’
On the flip side, a major part of her inner journey with the condition has been connecting with others who have HCM, or similar conditions.
Speaking to the common threads she’s noticed in people’s stories, she describes ‘the emotional battle’ following the diagnosis.
Though she’s grappled with letting HCM define her, Lindsay believes that her ‘challenges’ have ultimately given her the experience and strength to make the world better for others
‘It completely upends your life and makes you have to think differently, makes you have to live differently. And change is hard for anyone. So that’s definitely a big commonality, just coming to terms with now having this new thing attached to you,’ she described.
Though she’s sometimes grappled with the notion of allowing HCM to define her, Lindsay believes firmly in using her experiences to change the world for the better.
‘I think adversity improves the world,’ Lindsay says, adding that she gets exercise these days mainly with long walks throughout Manhattan, where she’s lived for the past eight years.
‘When we are someone that is faced with adversity, we can just sit there and wallow and feel sorry for ourselves or we can realize that it’s a superpower.
‘We can realize that now we have this story. And we can use it to impact change, we can use it to connect with other people who’ve gone through the same thing and speak with them and connect with them, and somehow improve their lives.’
‘These challenges that I’ve been given, I’ve been able to use them as a narrative of triumph.’
