St. Joseph woman’s rare condition aiding research to help others

By Leah Rainwater

A local woman is using a heart problem she’s had since she was born to help doctors at the Mayo Clinic learn more about the condition and better ways to treat it.

Alexis Owens has dealt with Ebstein’s anomaly, a rare heart defect where the tricuspid valve in the heart is improperly formed, since she was a child.

“It focuses on the abnormality of the tricuspid valve … and the tricuspid valve is a valve on the right side of the heart,” said Dr. Joseph Dearani, the Mayo Clinic director of pediatric and adult congenital heart surgery. “Typically the problem is, it’s under-developed and leaks severely.”

Owens said the condition has really affected the way she lives.

“For me, this condition has resulted in serious challenges, including fatigue, dizziness and significant exercise intolerance,” Owens said.

Owens also experiences a heart gallop rhythm with tachycardia (fast heart rate). But her condition affects more than physical aspects of her life.

“I often struggle with an irregular heartbeat, and have had recurrent near-syncope and syncope episodes, especially when standing,” Owens said. “These symptoms have greatly diminished my quality of life over the last few years. The medical uncertainty leading up to this point has also impacted my mental wellbeing.”

In a Facebook post, Owens announced she was accepted into the Adult Congenital Heart Disease Biobank, a program that gathers data and biological samples from adults with congenital heart disease to improve the understanding and treatment options for the conditions.

“Being part of this program is meaningful to me as it contributes to research aimed at enhancing care for individuals like myself,” said Owens.

Owens calls the opportunity “unique” as she’s proud to support and be a part of something that may lead to possible cures.

“It’s a unique opportunity to not only support groundbreaking research but also to help pave the way for more personalized treatment and improved monitoring for patients like myself,” said Owens. “I’m proud to be part of something that could make a meaningful difference for many.”

Owens was in Rochester, Minnesota, at the Mayo Clinic at the end of September for her first visit.

She will be going back to the Mayo Clinic at the end of October, where doctors will be doing research on if they’re going to do a tricuspid valve repair or a bidirectional Glenn procedure.

One thing Owens mentions is the big financial burden all of the traveling and surgeries has on her and her three kids, especially while being gone and away from work for days at a time.

Owens’ friend set up a GoFundMe ahead of Owens’ big surgery.