At the age of 15 years old, I was a three season athlete in high school: soccer, basketball, and track and field. They were a huge part of how I defined myself – I loved sports. I was in a track and field hurdle event, got dizzy at the finish line, and almost passed out. That was unusual for me – I’d never felt anything like that. I wasn’t a kid who was being reckless – using substances, anything like that – which, of course, are the first questions you get asked. After a few tests at my doctor’s office, they determined that I was hypoglycemic. They thought that was probably the reason for my dizziness. In the meantime, coincidentally, they heard a heart murmur they had never heard before – mitral valve prolapse, pretty common. So they decided to put me in for some follow up testing, just in case. I went to some local cardiologists, did my stress test, broke some records – because they were used to doing a lot of 70+ year olds, as opposed to a teenager. They felt like everything looked pretty good. But they felt more comfortable sending me to an electrophysiologist, just in case, and I ended up over at Beth Israel Deaconess, where my cardiologist I’ve now had for my whole life took one look at my tests and said, you know, you’re borderline for something called Long QT syndrome, and you’re sidelined until we know otherwise.
At the time, genetic testing was this two year wait, it was an expensive process. He was able to get me into a study which still took six months. When I got sidelined, I was in my starting my senior year, and my hope and goal was playing division one soccer. I had been in active talks with the college I wanted to attend. So that was devastating. I was the captain of all three sports had keep it on the hush for a while. Because we didn’t know what it was going to lead to – if it led to nothing, we didn’t want that information out there, ruining my chances of playing collegiate sports. About six months later, was actually on Good Friday, I’ll never forget, I got the call saying the genetic results came back. And I had Long QT syndrome, which was definitely really hard to hear at that time. Sports was a big part of how I defined myself – but with awesome family and friend support, I was able to finally start learning about Long QT syndrome.
My mom really wanted to educate herself. She found the SADS Foundation, which was really the only resource she could find at the time with regards to education about what Long QT was. This was back in the year 2000, and things have certainly come a long way since then. At the time, I was only able to connect with a woman who was about 10 years older than me, who lived in California, and had an ICD, and that was the best they could do – where now it’s incredible. You can talk to so many people.
I approached my electrophysiologist to see if having an ICD implanted would remove my restrictions from competitive play. He reviewed my history and saw I didn’t have any classic symptoms besides the dizzy spell; otherwise I was looking very healthy. So he was comfortable with implanting the ICD and removing restrictions with the understanding that if any other symptoms presented, then then I would be done. In the meantime, I’ve thrown myself into a lot of other things. I’m also an artist – I got very involved in art when I went off to college, I really threw myself into my grades and other activities, defining myself in different ways. Right before college, I had my first ICD implanted, which was an interesting experience. I was always the young one in the waiting room. It gave me the freedom I needed at the time.
While I was sidelined, I also decided that I would take on the pageant world, which is super funny to anyone who knew me at the time – I barely brushed my hair, I’d wear my sneakers and jeans over anything else. My guidance counselor suggested it to me. It was this healthy new form of competition. And walking in to that interview was incredible, because I got to tell the judges all about this condition I had, and how ultimately, I wanted to educate people more about it and about sudden cardiac arrest – that it happens in young people. And I remember walking out and saying, Wow, that felt really, really good.
I didn’t win my first pageant – I walked like a football player in my heels. It was a little bit of a disaster, but it was an awesome experience. And I ended up sticking to it. While I was able to return to sports, I opted not to play at the competitive level for D1, but I got pageant in my blood and started working towards that. It led to a lot more advocacy work, and connecting with SADS and other organizations. In 2006, I won the Miss Massachusetts pageant, and travelled all over the country and even internationally, speaking about heart disease in children, how real it is, and how much it affects us. I was able to do a lot of work both in Massachusetts and in Washington, DC to lobby for different bills. Probably the most amazing part of that experience was really connecting with young people who had heart conditions, and talking to kids. I went to camps. I did all kinds of fun events. I was 17 when I was diagnosed – but I couldn’t imagine being so much younger than that, and not having support systems in place. I’d show them my scar, and we’d compare our scars. The message was, Hey, heart condition or not, you can do whatever you want. I didn’t think I’d have a crown on my head one day, but here I am. Heart disease does not have to define you.
I competed at the Miss America Pageant. I did a lot of interviews at the time with Fox News and CNN, Inside Edition and USA Today. That Miss Massachusetts crown gave me the megaphone for heart disease awareness. After those adventures, I continued with the public speaking for a while, and ended up starting a family of my own. I have four kids. My two youngest are mine biologically. So I’ve been on top of genetic testing for them.
The interesting part about my story is that a few years ago, I actually had my defibrillator removed permanently, because I was told that my particular mutation – I have Long QT type two, the hERG mutation – is no longer deemed as life threatening. It was the most wild experience to hear that. He essentially told me that when my battery was up in the ICD, I’d have the option to keep it or have it removed. I didn’t want to have a foreign object in me. But it was a very strange experience to have my defibrillator taken out. At that point, I was on my third one, and when it was out, I literally felt a hole in my chest where it used to be. It was sort of losing a limb in a sense, it was a huge part of my identity.
Through the years, it’s been quite the journey. I certainly wouldn’t change any of any of my history, I think it made me into the person I was meant to be. And, again, the best part in all this has been able to hopefully inspire others and try to save lives.
What was the biggest way that your diagnosis changed your life?
Initially, being told I couldn’t be an athlete anymore was a huge blow. Because that was one of the most important ways I defined myself. I’m a mental health counselor, I work with teenagers – so I understand now even more why it was taking part of my identity away – it was traumatic.
But it also led to incredible stuff, it really did. I never would have walked on that stage, or spoken to those audiences, or been connected with so many people if it weren’t for my diagnosis. I defined myself in new ways, and I matured in ways a 17 year old shouldn’t probably have to. But I was able to really recognize what was important in life, reflect on that, and make it my mission.
How did you get started doing advocacy work, and what kind of work do you do?
When I first started, the American Heart Association actually found me because I was doing the pageants. I didn’t know what the next steps were – I knew it was important to talk about the condition I had, I knew that probably a lot of other young people had it based on the research I was doing. The American Heart Association really set me on that path to advocacy work. I was able to get out there and speak and tell my story, and I saw how powerful that could be. SADS was incredible, because I could connect with other young people and it was much more specific to my condition. Speaking at events for SADS and getting involved in different ways – it was huge.
Parent Heart Watch is an incredible group. It’s founded by parents who lost children to various conditions like Long QT syndrome, HCM, and other congenital heart defects. The work they do in the memory of their kids is second to none. I was invited to the first conference and I was so nervous to walk in because here I was, the surviving child, but I have never been so embraced in my life. They said, we do this work for more stories like yours, and they do great work with heart screenings across the country in memory of their kids. I can’t imagine going through what they’ve gone through, but it’s powerful, the stuff they’re doing.
As a result of that, most of them have nonprofits across the country. And I’ve visited a lot of their nonprofits and spoken at their events. And for a while, I was also involved in Heartbeat International. Here in the United States, there’s a shelf life for defibrillators and pacemakers, where after a certain amount of time, we can’t use the devices. It’s similar in other developed countries. This organization created the means to donate them to third world countries and find volunteer physicians so the people who need them, that normally would never get them, were able to have the surgery, were able to have the device, were able to have their lives saved.
Sometimes you say, it’s just my story, it’s just my life, but the power in others being able to hear your story and relate and connect to it is an unbelievable journey.
What encouragement or advice would you give to someone who’s just been diagnosed with a SADS condition?
Connect right away. Being diagnosed is a very lonely, difficult place to be. And again, my family was amazing with support, but nobody truly understood. When I discovered and met other survivors, that’s when I felt a real sense of connection, a better sense of healing. There’s some dark places that your mind can go sometimes and it’s important not to feel so alone with that, or guilty about it, or that you’re weird.
Educate yourself. The internet is a scary place now for faulty information. So go to reliable sources, talk to your doctors. It can be very scary initially. But ultimately, that’s what’s going to help you move your life forward.
At the end of the day, there’s so much you will always offer this world, no matter your diagnosis, no matter what. And if you have that comfort level, share your story, because it can change somebody else’s life.
How has the SADS Foundation been helpful to you?
I am forever grateful to this organization, because they really were a pioneer in making sure that information was out there about Long QT Syndrome. My mom is an educator, she searched far and wide, and SADS is where she found her most reliable information. And it helped us connect to other people. They were on the ball with offering everything that someone with Long QT needed. It’s only evolved from there, with the national conference. It’s absolutely incredible the work you guys are doing.