Nearly 1 in 100 babies is born with a heart defect in the U.S. each year. Kadie Neuharth is one, doctors believe, but her symptoms didn’t appear until later in life. Kadie’s diagnosis of restrictive idiopathic cardiomyopathy means her heart is failing and she’ll likely need a heart transplant. Her case is unique in that this type of cardiomyopathy is almost always found in childhood.

According to a study by the European Society of Cardiology, four in ten cardiomyopathies—a major cause of sudden cardiac death and heart failure in young people—are genetic, making family screening important to help prevent early death in apparently healthy relatives.

Preventative EKG and echocardiography testing can identify cardiomyopathies, among other heart conditions, in young athletes and students, early, so measures can be taken to help protect young lives. LEARN MORE

Mitchell native uses rare diagnosis to ‘change people’s lives’ as AHA spokeswoman

Kadie Neuharth, a Mitchell native, speaks during the Twin Cities Go Red for Women Lunch and Learn earlier this month in Minneapolis. Neuharth, who has a heart condition called restrictive idiopathic cardiomyopathy, served as this year’s Go Red for Women campaign spokeswoman. (Photo submitted by Emily Steffen Photography)

MINNEAPOLIS — It’s not often Kadie Neuharth is without a smile.

The Mitchell native’s smile shines even brighter when she’s talking about the American Heart Association. This year, Neuharth has been selected as the Go Red For Women campaign spokeswoman, serving as the face and voice of the association in the Twin Cities.

Plastered across the Minneapolis-Saint Paul region, you’ll find Neuharth’s face on billboards, buses and magazines.

It’s hard to believe the 31 year old, who looks fit and healthy, is facing a very rare, serious heart condition called restrictive idiopathic cardiomyopathy. The condition is a form of heart muscle disease, typically a poorly recognized condition due to its rarity.

It’s even more rare to find the disease in adults, like Neuharth. Restrictive cardiomyopathy is almost always found in childhood, but Neuharth’s condition didn’t begin when she was young. Her journey to diagnosis and becoming the face of the Go Red for Women campaign started approximately four years ago while working out.

Neuharth, 27 at the time, found herself with shortness of breath while at the gym and frequent mild headaches. It quickly worsened.

She saw a doctor, who ordered an electrocardiogram (EKG), which resulted in abnormal results. More testing was done, and the same abnormal results came back with few answers.

“As every abnormal test came back, it was fear on top of fear. Nobody seemed super confident on what was going on,” Neuharth said in an interview with The Daily Republic. “It was very scary.”

Finally, she went to the Mayo Clinic, where it was confirmed restrictive idiopathic cardiomyopathy. The diagnosis is referred to as idiopathic because the cause of it is unknown.

Doctors believe it was a congenital heart defect, but Neuharth’s symptoms didn’t appear until later in life.

Most often, children who are diagnosed with the condition undergo a heart transplant before reaching adulthood. Neuharth knows one adult with a similar condition, whom she met on social media. And the person has since undergone a transplant, she said.

Congenital abnormalities of the heart and cardiovascular system are reported in one out of 100 births in the United States. Half of these children need medical or surgical help during infancy, and 10 percent survive to adolescence without, according to the American Health Association. The rare exception is when children with the abnormality live a normal life into adulthood, like Neuharth.

And it’s this story of Neuharth’s that sparked the interest of the Go Red For Women campaign with the American Heart Association.

“She really stood out as having a unique story and one that we don’t hear about all the time,” said Emily Swanson, a communications specialist for the American Heart Association. “Her being a rare condition that’s ultimately causing her to go into heart failure is something we don’t hear about all the time.”

Neuharth, a 2005 Mitchell High School graduate, visits the Mayo Clinic every six months. This winter she will be evaluated to be on the heart transplant list.

Until then, she focuses on the positive in life. Every month, Neuharth is able to return to her home state of South Dakota, for both visiting family and work purposes. Neuharth is a client manager for Unum, a disability insurer in the United States.

“The fact that she was diagnosed with this terrible condition in her mid-20s and she has a bright attitude and outlook on life,” Swanson said. “She wants to help people by sharing her story, because sometimes she feels alone, and she wants to get the word out there so others don’t have to feel alone, too.”

Changing lives

Earlier this month, Neuharth shared her story with hundreds of women during the Twin Cities Go Red For Women Lunch and Learn.

As the spokeswoman, she will also participate in a fashion show this spring, and the annual heart walker later this year.

And through it all, her positive attitude has never waivered. It’s this that really makes her stand out for the association.

“It’s rewarding to be able to share your story and turn a kind-of-not-great situation into something that can help others,” Neuharth said. “I think people look at me, and then look at other people. They say, ‘She’s young and healthy,’ and that’s not always the case.”

Throughout the campaign, donations received will be used in research and development to continue in medical advancement.

“That’s really how we can change people lives,” she said, “and, help raise awareness.”

Original Story: http://www.mitchellrepublic.com/community/people/4390757-mitchell-native-uses-rare-diagnosis-change-peoples-lives-aha-spokeswoman

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