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Health providers seeking solutions to raise awareness for newly discovered kidney disease

According to the American Kidney Fund, it is estimated that 13% of Black Americans have two APOL1 gene mutations

CHARLOTTE, N.C. — LaVarne Burton and Dr. Silas Norman are seeking solutions to bring awareness to a newly discovered disease many people didn't know about until a few years ago. 

“It’s a very important opportunity for us to inform people about the disease," Burton said. "Many of us didn't know about it. It's recently discovered." 

Burton and Norman, who work with the American Kidney Fund, are bringing attention to the nation's first AMKD Awareness Day. APOL 1 mediated kidney disease, known as AMKD, is a certain form of kidney disease with a genetic cause. 

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“For a long time, we’ve known that certain communities were at higher risk for kidney disease than others," Norman said. "So it's very exciting to learn about APOL 1 variants as a potential risk factor for kidney disease." 

Discovered just 14 years ago, it’s a mutation in the APOL 1 genes linked to a higher risk for rapidly progressing kidney disease.  It can eventually lead to kidney failure.

“Blacks, African Americans, Afro-Caribbeans, Latinos, all these groups should consider whether or not they have non-diabetes related kidney disease and consider getting genetic testing,” Burton said.

According to the American Kidney Fund, roughly 13% of African Americans have it. The nonprofit reports that people with certain African ancestry are at an increased risk of having a variant in one or both of their APOL 1 genes. 

"Kidney disease is a disease of inequities that are unacceptable to us and unacceptable to society," Dr. Joseph Vassalotti, the chief medical officer of the National Kidney Foundation, said. 

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Vassalotti said his group is raising awareness about the disease to ensure health equity. 

“We work with many different groups, community health clinics, churches, the YMCA,” Ashby Andrews, the executive director of the foundation's Carolinas chapter, said. 

She says these partnerships help connect people across the Carolinas to resources when it comes to kidney disease and knowing about AMKD. Andrews said the foundation has met with North Carolina doctors who are now educating their patients about the disease to identify symptoms. 

Vassalotti said it’s also important to check with your physician about getting tested for APOL 1 and if you need to see a kidney specialist. 

“Genetic testing for APOL 1 is broadly available and it’s covered by many insurance companies,” he shared.

Contact Nick Sturdivant at nsturdiva1@wcnc.com and follow him on Facebook, X and Instagram

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