Deryl Cunningham was fighting a winning battle against kidney disease, reporting a 10% improvement in kidney function through “lifestyle changes.”
Unfortunately, his health began deteriorating leaving him confused and in search of an answer.
He was first diagnosed with stage 2 kidney disease by a doctor in Terre Haute, Indiana. After relocating to Edwardsville, Illinois, a physician there set him on a path of discovery. He shared with Cunningham rare cases where kidney disease had been reversed.
He would eventually need a kidney transplant, but his quest for answers led him to Saint Louis University Hospital.
“I got to the bottom of what was really going on,” he said in a SLU release.
He underwent gene typing and learned he inherited a high-risk gene from each of his parents.
African Americans have an increased risk of kidney failure, and research shows some of the higher levels are related to variations in a gene called apolipoprotein L1 (APOL1).
“I wish I would’ve known that information sooner in life,” he said.
Krista Lentine, M.D., a SLUCare nephrologist and SLU School of Medicine professor, said “this high risk genotype is present in approximately 15% of African Americans.”
Cunningham’s condition and medical director of living kidney donation at SLU Hospital.
Cunningham knows first-hand the impact of kidney disease on African Americans but added, “we tend to be quiet about things in our community.” His cousin is also a kidney transplant recipient, and he has several acquaintances who also have been impacted by the disease.
Cunningham now partners in research with the SLUCare kidney transplant team to raise awareness about the APOL1 gene. He has stepped up to help because “we tend to be quiet about things in our community,” he said.
Lentine’s team is part of a clinical study, “APOL1 Long-term Kidney Transplantation Outcomes Network (APOLLO)," which is supported by the National Institutes of Health (NIH).
“The purpose of APOLLO is to improve the lives of those who donate and receive kidneys by learning more about genetic variations that are found in some people of African descent,” said Lentine, who also serves as medical director of living kidney donation at SLU Hospital.
Eligible participants include living kidney donors, recipients of a kidney transplant from an eligible living or deceased donor with recent African ancestry, and recipients of multiple organs transplanted simultaneously. Researchers seek to enroll at least 2,614 donor-recipient pairs.
APOLLO seeks to quantify how much of the higher risk of transplant failure currently assigned to African American donor race is due to kidney risk variants in the donor.
Lentine’s, “Apolipoprotein L1: Role in the Evaluation of Kidney Transplant Donors,” recently published in Current Opinion in Nephrology and Hypertension, discusses how APOL1 genotyping may improve transplant donor evaluation.
Researchers also are reassessing how APOL1 genotyping might help patients with chronic kidney disease understand and manage their kidney risk.
The SLU team and Mid-America Transplant Foundation recently launched a pilot study in their St. Louis kidney care clinics offering APOL1 genotyping to African American patients and assessing attitudes about genetic testing and kidney care. Lentine said 130 patients are enrolled in the ongoing local project.
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