This 30-year-old American woman has no pulse and 'runs on batteries'

An American woman with a rare genetic heart condition has no pulse in her body and says she “runs off batteries”. Sofia Hart, a 30-year-old woman from Massachusetts, has irreversible dilated cardiomyopathy. The woman talked to the American weekly magazine PEOPLE about living with the disease.

Irreversible dilated cardiomyopathy is a heart condition in which one of the ventricles does not work as well, which can lead to heart failure. To keep her heart pumping, Hart uses a life-saving medical device to save her from complete heart failure. Hart is also awaiting her heart transplant.

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Hart discovered her condition in the summer of 2022 while she was working at a horse farm. She told PEOPLE that she started feeling extremely fatigued and achy. “It’s like a fatigue that you can’t really describe. I wasn’t tired in my brain, but my body was so tired.”

The disease is rare as around one in 500 American adults have cardiomyopathy - a more general term for conditions relating to the heart muscle. 

Hart further said that her twin sister Olivia was also born with the same rare genetic mutation, but no one realised Hart had it too until she fell ill.

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At first, Hart believed she had Lyme’s disease because of all the fatigue she experienced from working outside as it was possible that she could have been bitten by a tick. She even took a Lyme test at a walk-in disease centre.

Hart’s sister Olivia had suffered heart failure seven years prior and had to get an LVAD device to tide her over until she had a heart transplant in 2016. A left ventricular assist device (LVAD) helps keep blood flowing around the body by mechanically pumping the left side of the heart.

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Hart received the same course of treatment at age 29 that her sister had at 22, living with an LVAD until a transplant was available. At her home in Boston, Hart is connected to a wall outlet to power the device. 

She told PEOPLE, "That cord is pretty long, and I have mastered living in places where I can get around on that cord."

Hart documented her life on TikTok and her account quickly took off, garnering millions of views as she explained that she has no pulse and she “runs off batteries”.  Her video got 1.5 million views. 

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