I was born with a heart condition called Holt-Oram syndrome, with only four fingers on my right hand, my heart had a hole in it and was on the right side of my body, and my intestines were twisted. I required multiple surgeries starting when I was two days old, including stomach and hand surgery as well as a major operation to fix the hole in my heart.
I also have scars from being tube-fed until I was four years old. In fact, there is only one photo that exists where I am totally without any scars on my body.
When I was younger, I thought those surgeries were all I needed. When my cardiologist told me that I needed to receive a pacemaker when I was just seven years old, it was a bombshell. It turns out that built-up scar tissue from my first open heart surgery at five months old was slowing down my heart beat. So, I got a pacemaker put in at age seven and its battery replaced at age 14. I will need to have the battery replaced again in about 5 years in a procedure that isn’t without some risk.
As I started to get involved with the American Heart Association’s Go Red for Women® movement, I was so shocked to learn how common heart disease is in women and that it is our No. 1 killer. What I was happy to learn is that Go Red for Women encourages all women to become advocates for women’s heart health, starting with their own.
The American Heart Association and Go Red for Women advocate for policies that make it easier to live heart-healthy through getting active and eating smart. They also advocate for more research, which is critically important since women have been underrepresented in research to-date. Research can help us understand the differences in how cardiovascular disease presents in and affects men and women, and how to best prevent and treat this deadly disease appropriately specific to gender. In addition, I’m alive today because of the research that helped advance the treatment of babies born with congenital heart defects, as well as the development of technology, like my pacemaker. I can say firsthand that research saves lives.
That’s why I’m excited to be part of a Facebook Live event on Thursday, February 28 to help launch a new initiative, Research Goes Red™, with the American Heart Association and Verily. This will help connect more women to research opportunities, such as participating in surveys and focus groups, contributing data for clinical research projects, and testing new tools, technologies and treatments to make a difference in preventing and treating heart disease for generations to come. I hope you can tune in.