Sofia Hart has irreversible dilated cardiomyopathy – as does her twin sister
A Massachusetts woman with a rare genetic heart condition has no pulse and says she ‘runs on batteries.’
Sofia Hart, 30, has irreversible dilated cardiomyopathy – a disease of the heart muscle when one of the ventricles does not work as well, which can lead to heart failure. She lives with a left ventricular assist device (LVAD) to keep her heart pumping while she waits for a heart transplant.
As many as one in 500 American adults have cardiomyopathy – a more general term for conditions relating to the heart muscle, but irreversible dilated cardiomyopathy is more rare.
Ms Hart discovered she had the condition in the summer of 2022 while working at a horse farm. She started experiencing achiness and extreme fatigue. Initially, she suspected Lyme disease, but further tests revealed her rare genetic condition.
Her twin sister, Olivia, had already experienced heart failure seven years prior and received an LVAD until she underwent a heart transplant in 2016. Now, Sofia follows the same treatment path, relying on the LVAD to keep her alive while she waits for a donor heart.
When at home in Boston, Sofia is connected to a wall outlet to power the LVAD. However, when she goes out, she relies on two batteries and always carries spares.
The symptoms of a cardiac arrest differ between men and women, experts warn, highlighting the importance of understanding individual risk factors and seeking appropriate medical attention.
While Sofia anxiously awaits a heart transplant, she continues to live her life, determined not to let her condition define her. She is grateful for the advancements in medical technology that allow her to stay alive, and she remains hopeful for a new heart.
‘I’ve lived for a year without a pulse… I run on batteries,’ Sofia Hart says. And with the support of her twin sister and the medical community, Sofia faces each day with strength and resilience.
Source: DailyMail.com