In a remarkable story from Boston, 30-year-old Sofia Hart is defying the odds, living her life “without a pulse” due to a rare genetic heart condition. Multiple media reports have given a detailed account of her struggle. Diagnosed with irreversible dilated cardiomyopathy, a disorder affecting one of her heart’s ventricles, Sofia’s condition can lead to heart failure.
Sofia owes her life to a Left Ventricular Assist Device (LVAD), a technology that keeps her heart pumping. This device, powered by batteries, acts as a temporary solution until she can undergo a heart transplant, keeping her alive in the meantime. Sofia first realized something was wrong while working at a horse farm in 2022. “I started getting really achy and so fatigued. It’s like a fatigue that you can’t really describe,” she shared.
Remarkably, Sofia’s twin sister, Olivia, shares the same rare condition, although hers was discovered later when she fell ill. Olivia also had to rely on an LVAD until her successful heart transplant in 2016.
“I’m doing the work-up for it,” Sofia explained about her transplant process. “I feel guilty having the option of choice to be finding my footing before jumping into transplant.” She named her LVAD “Janis” and shared her journey on social media, including TikTok, where a video of her explaining her daily routine has garnered over a million views. Sofia revealed how she “runs off batteries,” plugging her LVAD in before leaving her house and carrying spare batteries with her.
This life-saving device comes with an essential feature – an alarm that alerts Sofia when it’s not connected to a power source, ensuring her safety and well-being. Sofia’s story is a testament to her resilience, determination, and the incredible advancements in medical technology that are changing lives.