Mass. Woman, 30, with Rare Genetic Heart Condition Says She Has No Pulse: 'I Run on Batteries' (Exclusive)

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Mass. Woman, 30, with Rare Genetic Heart Condition Says She Has No Pulse: 'I Run on Batteries' (Exclusive)
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Sofia Hart has no pulse due to heart failure, and uses TikTok to document her life with an LVAD, a device that pumps her heart while she awaits a heart transplant

TikToker Sofia Hart documents life with an LVAD — a device that keeps her heart pumping — while she awaits a heart transplant

Although Hart's twin sister Olivia was born with the same rare genetic mutation, It wasn't discovered until Sofia also became ill., since she worked outside and could have easily been bitten by a tick that carried the bacteria. She went to a walk-in clinic to take a Lyme test. After next month's echocardiogram, Sofia tells PEOPLE, “I’m ready to dive into the transplant process.”

“They’re pretty heavy,” says Sofia. ”I have to bring my entire battery set in case. I was commuting back to Martha's Vineyard for work this summer and like, I'm carrying like 80 lbs. in a suitcase of just medical equipment.”

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