Having Escaped Death, Bethany Keime Is Determined to Warn the World.
At 17 years of age, when the Miami, Florida native was a senior in high school with a promising dance career and her whole life in front of her, she was diagnosed with the number one killer on school campuses and the leading killer of student-athletes. Her life changed forever when she fatefully found out that she has hypertrophic cardiomyopathy. “It was devastating,” she says. “Just a week earlier, I had accepted an invitation to be part of Miami City Ballet’s pre-professional program to dance six days a week, six hours a day. Then I found out I had a heart condition that kills athletes without warning.”
Her aunt was diagnosed with hypertrophic cardiomyopathy first. Since it’s often genetic, her aunt encouraged Bethany and her eight siblings to get a heart screening. From this, Bethany and one sister found out they have the condition which usually has no recognizable symptoms. The first sign too often is death. This is the condition usually to blame when an athlete unexpectedly collapses on the field. Statistically, 1 in 300 youth has an undiagnosed heart condition, though not all lead to death.
The condition presents itself differently in people. Bethany’s sister was told to immediately halt anything that really got her heart pumping, including the sports and other physical activities she was used to. The doctor told her she was lucky to be alive. Bethany was a little luckier. “For me, I can still be active which I feel grateful for. The doctors have allowed me to keep dancing.”
A lifetime of medication, testing, and treatments began. This included having to wear heart Holters. “It was mortifying to show up to dance class with a device the size of a CD player stuck down my leotard with wires heading out in different directions. At that time, I didn’t know how my condition would limit me,” she says. “I didn’t want to talk about it, and I tried to hide it from people.”
That was seven years ago.
Over time, she has realized more and more that she is extremely lucky. “It’s a condition that usually kills people before they know they have it, so to have found out about it early was a blessing.”
Both sisters now have defibrillators implanted into their chests. Though Bethany’s device protrudes from her side and has left her with scars, she feels grateful for the life-saving device. Still, it’s life-altering as well. It’s a lot for a young person to deal with. “My sister and I felt super blessed that we had each other to talk to but knew others didn’t have anyone to lean on,” she says. “That gave us the idea of doing something proactive and positive with what we had been dealt.” They decided to use the power of social media to educate others about heart conditions that affect so many yet are largely unknown.
They started the HeartCharged Instagram page to spread awareness. “It just blew up,” she says. “We found all of these heart warriors, others who were going through what we did. A girl my age was so scared about her diagnosis and was refusing treatment until she saw how I was dealing with it. It’s a really scary thing for kids to go through and knowing you have someone who gets you is so important.”
The support Bethany found online made her want to do even more. She built her own website and created her own 501(c)(3) nonprofit, HeartCharged. Thousands of followers gather online to engage with her original content that makes people smile, cry, cheer, understand, and laugh.
She puts on community heart screenings and teaches CPR and how to use an external defibrillator to prepare people to act in emergencies. She also donates defibrillators. She puts on school assemblies teaching the Get HeartCharged steps to cardiac survival. And she’s even helping to change the law.
“We just got a law passed in Florida to get CPR and AED training for high school students, which can prevent death from sudden cardiac arrest,” she says. “Next year we’re working on getting heart screenings for all kids in Florida. Many heart conditions have no recognizable symptoms. With screenings, deaths can be prevented.”
For high school sports, she says, students need to have a physical but not a heart screening. “It’s crazy we’re not doing heart screenings along with physicals when sudden cardiac arrest is the #1 killer of student-athletes. It’s a super easy EKG test that costs $20 and takes maybe 15 minutes. We do hearing tests and scoliosis tests and cholesterol tests; why are we not screening for heart conditions?”
Her mom nominated Bethany for the CGI Celebrating Strength award. Here is some of what she said about her: “This young woman is a total force and at just 25 years of age. Having escaped death, she makes it her mission to help other people, especially young people, do the same. All while finishing her college degree and working. Just over a year ago, she started building what is now an international community of patient-to-patient support for people living with heart conditions. She holds monthly virtual meet-ups and answers messages daily. She puts together welcome packages. She demonstrates complete body positivity showing off the bulging defibrillator implanted in her side. Showing her gratitude despite life- and body-altering treatments has helped others accept life-saving treatments as well.”
Bethany’s compassion and commitment to empowering others and raising awareness have earned her recognition of being named a CGI Celebrating Strength Hero. She is one of four people chosen statewide who have won a $1,000 prize from the window and door manufacturer in its contest to recognize everyday heroes going above and beyond to help others. If chosen as the overall winner after a public voting campaign, she could win an additional $5,000.
“The way Bethany has taken a diagnosis that could have been deadly and turned it into a way to help others is inspiring,” said Bob Keller, President of the Southeast Business Unit for PGT Innovations, CGI’s parent company. “Her dedication to raising awareness for this important cause and changing laws to save lives is definitely worthy of recognition.”
Bethany’s future goals include expanding state laws to include heart screenings for students, expanding her program of creating care packages for heart patients, spreading more awareness through increased partnerships, and tapping into new types of media to connect with a larger audience.
Before her diagnosis, Bethany never would have dreamed she’d be going down this road and be creating a nonprofit with her own hands that would have so much meaning for so many. “I do feel like HeartCharged was meant to be. As much as my diagnosis and treatment are totally life-changing, I wouldn’t change them. I’m grateful for the experiences I’ve had and the people I’ve met. I’ve truly found my passion. All this came from a diagnosis some would say was a curse, but I see it as a blessing,” she says. “I screened 31 people last month, and one kid had a deadly, but curable, heart condition. I was in tears; I helped save his life.”
To find out more about all of the winners and to cast your vote, click here.