Voices Across America

Sisters Hannah and Bethany Advocating for Heart Health

Bethany and Hannah

State: Florida
Congressional District: FL27

Diseases

Genetic Disease, Heart Disease

Issues and Challenges

Bethany and Hannah has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Gaslighting, Invisible Illness

My Story

We’re Bethany and Hannah, sisters with #hypertrophiccardiomyopathy , who created @heartcharged with the intent to provide patient-to-patient support and help end the tens of thousands of preventable deaths from sudden cardiac arrest each year.

We started sharing our story on Instagram out of gratitude from having each other during the trying times. We wanted others to have someone who understood them too. We found so many friends, friends who needed to see what life young and with a defibrillator looked like, friends who needed to know there was someone else out there with the same condition to talk to, friends who needed reassurance when wires itched or rashes broke out or difficult news was heard.

Now these heartcharged friends are friends, and we really are connecting members of the heart and chronic illness community from around the world. We hold virtual and personal meetups. We give care packages.

We share in a raw and real way to try to get people to "get it" and take action through our outreach and content. Sometimes it might be tear-jerking, often it’s upbeat, quite regularly it’s quirky, and most times it’s there to make you smile and hopefully do something.

Our journey includes the jolt of randomly finding out while in high school that you’ve been living with a deadly heart condition and the doctor doesn’t know how you’re alive. The jolt of having implanted defibrillators stuffed under your skin. The jolt of having your defibrillator save your life after going into sudden cardiac arrest in your sleep. Not your teenage norm.

Our advocacy focus has grown over time. First we focused on heart screenings for youth since ours saved our lives. We shared the almost always unrecognized warning signs of a heart condition in youth. We soon realized this and more was needed. There would still be sudden cardiac arrest (SCA). So we started sharing awareness on what to do in case of SCA. We are also very active politically, advocating for public health measures, speaking to and before elected officials, working on campaigns, and profferring legislation.

It’s an important part of how these PATIENTS are RISING. Last year, our awareness campaign had a boxing theme and we utilized the CPR-beat song, “The Eye of the Tiger.” The lyrics include “rising up to the challenge of our rival.” Our rival is sudden cardiac arrest, and we’re determined to have more survivors.

That brings us to this year’s campaign and our latest project which we are particularly proud of, AED: The Music Video. Greg Page (Original Yellow Wiggle) wrote the catchiest song about using an AED and asked us to bring it to life. Please go to @heartcharged and follow us and watch and share the video. You’ll help educate the next generation of life-savers and certainly enjoy it yourself.

My Motivation and Inspiration

Our motivation is gratitude, and we stay motivated because we truly are blessed each day in so many ways.
Interestingly, though we are sisters with the same condition, it has affected our lives differently. Bethany has been able to continue dancing after being diagnosed and earned her degree in Dance Performance. Her implanted defibrillator even fits that lifestyle. Hannah was told to have a seat and take the stairs. Her implanted defibrillator is even a different style. But Hannah has found new ways to share her creative nature and is now studying film in college.

Though our paths may seem to have diverged, we truly come together @heartcharged to use our varying talents and abilities to create a wide variety of content to touch people in varying ways. And our mission remains unified - providing patient-to-patient support while working to end preventable deaths, the truly best way to have more patients to support.

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