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Riverton mother's life turned upside down by mysterious syndrome

By Heather Simonsen  |  Posted Dec 14th, 2016 @ 7:33pm


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RIVERTON — Katie Carone, mother of four, wrote a book for her children titled "Mommy Can't Dance," to explain the unexplainable.

"Mommy used to do lots of fun things with me," Carone reads from her book while in the living room of her Riverton home. "She helped me make cookies, she washed my hair with lots of bubbles. Now it's my turn to help mommy."

Once a fitness instructor who ran her own business, life has changed dramatically. On a trip to Disneyland in October of 2015, she got a viral infection.

"We got off a ride and I felt like I was going to pass out," Carone said. "I grabbed my husband. He got me to a table and I went down. Taking a ride with the paramedics is not the ride you want to take at Disneyland."

Doctors believe the viral infection triggered postural orthostatic tachycardia syndrome, or POTS, a condition she was predisposed to. Her heart rate goes up more than it should when she stands and her blood pools downward away from her brain.

"It's primarily cardiac in its origin," said Dr. Reid Harrison at the Granger Medical Clinic.

Doctors don't know what causes POTS, but they believe in her case, it's an autoimmune issue. They treat it with compression clothing, salt tablets and water intake, but there is no cure.

"For some reason, the blood's not getting to the heart to allow enough blood to pass through the heart, which then flows to the rest of the body," Harrison said.

There's no blood test for POTS, and it's often misdiagnosed.

"They thought I was on drugs because everything looked normal," Carone said.

She suffers from dizziness, fatigue and migraines, among other symptoms.

"That moment where you feel like you're about to pass out? That's what most of my days feel like: that tunnel vision. Things are foggy," she said. "There's some days I can barely make it from my bed to the bathroom without passing out."

Though her case is severe, she hopes one day she'll be able to function again and even travel with her family. For now, it's selfies in bed, board games and books. It's the little things she misses most.

"Walking the aisles of Target sounds heavenly," Carone said.

She's made it her mission to spread awareness of this little-known syndrome, while never giving up on a cure.

"I'm determined to not let this ruin my life," Carone said.

Researchers are still trying to find the cause of POTS. There are many underlying diseases associated with it including diabetes and Lyme disease.

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Heather Simonsen
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