Sofia Hart has irreversible dilated cardiomyopathy
A 30-year-old woman from Massachusetts, Sofia Hart, is living with a rare genetic heart condition that has left her without a pulse, and she describes herself as “running on batteries.” She has been diagnosed with irreversible dilated cardiomyopathy, a heart muscle disorder that affects one of the ventricles, potentially leading to heart failure. Sofia relies on a life-saving medical device called the LVAD (Left Ventricular Assist Device) to ensure her heart keeps beating as she awaits a heart transplant.
A left ventricular assist device (LVAD) aids in maintaining blood circulation throughout the body by mechanically assisting the left side of the heart in pumping.
According to The People magazine, Ms Hart discovered she had the condition in the summer of 2022 while working at a horse farm.
She told People, ‘I started getting really achy and so fatigued. It’s like a fatigue that you can’t really describe. I wasn’t tired in my brain, but my body was so tired.’
Although Hart’s twin sister Olivia was born with the same rare genetic mutation, it wasn’t discovered until Sofia also became ill.
Her sister had also suffered heart disease seven years prior, but genetics wasn’t among the factors considered until both of them were confirmed to suffer heart failure at a young age. Similarly, Olivia also had to get an LVAD device until her transplant in 2016.
Now, Sofia has to do the same and live with the device until she gets a transplant.
“I’m doing the work-up for it,” she tells People. “I feel guilty having the option of finding my footing before jumping into a transplant. I came out of the gates hot and then realised, well, the device is doing well, I’m doing well on the device, transplant is such a huge, huge, huge deal that I wanted to learn more about life, transplant, live with “Janis”-the name I gave my LVAD-accept all that’s changed, and now I’m ready to go to transplant.”
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