Sally Christenson nearly lost her life before learning that she was living with a genetic heart condition but, thanks to a genetic test, she didn't have to pass down that uncertainty to her kids.
"My mom and my brother have what's called HCM," Christenson said.
Hypertrophic Cardiomyopathy (HCM) is one of the most common genetic heart conditions, causing excessive thickening of the heart muscle and increased risk of cardiac arrest for roughly 1 in 500 people.
Despite her family history, Christenson's doctors told her she didn't have the disease because they couldn't detect it using traditional tests. That changed the night in 2015 that she suffered cardiac arrest.
"My husband just kept saying, 'Sally, we should go in to the ER,' and I said, 'No, I'll be fine,'" Christenson said. "And then I collapsed in our living room in our house and he provided CPR. He saved my life."
Sally, had a defibrillator surgically implanted to protect herself in the future, but with two boys of her own, she also took a step for their future. She elected to undergo genetic testing for herself and her family.
"I think definitely people don't always know it's an option," said Sarah Kreykes, a certified genetic counselor for the University of Minnesota Health.
Kreykes says the genetic test involves a simple blood draw, but can detect genetic mutations like HCM before symptoms begin.
"It's kind of like a spellcheck, so we're able to say, 'Go to this exact sentence and look for the spelling error,'" Kreykes said. "So we're able to very clearly determine do they carry the mutation their mom or grandmother had or not."
Though the tests are proven, Kreykes says some patients hesitate to undergo them for several reasons, including cost, which can range up to $5,000 depending on the complexity.
"Sometimes they're as low as about $500 in a case like the (Christenson) family where we know the mutation and we know what we're looking for," Kreykes said. "Then the cost is a lot lower."
Kreykes says patients are also often concerned about future implications, like insurance coverage and employment status if tests show a genetic disease before there are symptoms. She says test results can have implications for life insurance and disability insurance, but she says there are laws protecting individuals from changes to health insurance and employment.
Christenson says there were still many more reasons to go ahead with the tests.
"It was a no-brainer," she said. "I didn't care about anything else, because I just didn't want to have to worry about them."
Despite a 50/50 chance of passing HCM to either son, both of her boys tested negative.
"They don't have to undergo screening, they don't have to worry about, 'What if? When? Why me?' Those kinds of things," Kreykes said.
"To know that they don't have it and have to worry, it's life changing," Christenson said.
Kreykes says most insurance will cover consultations with genetic counselors, and they may also cover tests depending on the case.