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Kendrick Johnson is devoted to his young son. But Johnson is fighting for his life, and coping with an inherited condition that has caused his heart to fail.
“I woke up, couldn’t breathe. It was just out of nowhere,” says Johnson.
Years earlier, Johnson’s mom and grandfather both needed heart transplants, though no one put the pieces together until Johnson himself got sick.
Doctor Rebecca Hung is co-director of the center for inherited heart disease at Vanderbilt University. She says, “I think for many years, probably well over 20, 25 years, we’ve recognized that some of it runs in families, and typically we say, there must be a gene, but we don’t know what it is, we don’t know how to identify it.”
Now, more than 100 families are being tracked, with a focus on relatives who aren’t sick. “We wanted to be able to intervene in the totally pre-symptomatic stage to see if we can alter the natural history for them,” says Hung.
One of the ways doctors hope to do this is by treating gene carriers with preventive drugs. Dr. Hung asks, “When you have a gene, does the standard medications that commonly delays disease progression, will they work in these people?”
Johnson hopes that learning his genetic history can help protect his son. He says, “I really don’t want my son going through the same thing I’m going through.”
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