Emani had regular check-ups with her pediatrician growing up, but it wasn’t until an emergency department visit her senior year of high school that she was told her proteinuria, or elevated levels of protein in her urine, may be cause for concern. As she was gearing up for what was supposed to be one of the most exciting times of her life — her senior year of high school and the beginning of college — Emani’s symptoms of swelling, weight gain and back and stomach pain could no longer be ignored.
When her mom, Shaquita, took Emani to the hospital, the emergency department physician advised that Emani see a nephrologist (a doctor who specializes in diagnosing and treating kidney conditions) due to the levels of protein in her urine. Her nephrologist ultimately diagnosed her with focal segmental glomerulosclerosis (FSGS). When Emani discovered that her FSGS was genetic and was a clinical representation of APOL1-mediated kidney disease (AMKD), she was relieved to finally have answers. But while Emani was happy to have solved a piece of the puzzle, Shaquita was left with more questions; she didn’t know her genetic history.
“When I was asked the question, does anyone in our family have kidney disease, I had to start making phone calls. When I speak to my family and my friends about AMKD, I say, ‘look, genetics is important.’ I had no hesitation with getting Emani genetically tested. It’s very important that you are an advocate for yourself.”
Before Emani's genetic test where she realized she did have AMKD, she wanted to understand her FSGS diagnosis better. Through her own reading and research, she learned about the connection between FSGS, APOL1 variants, and kidney disease. She was not shocked when her genetic test affirmed what she had learned through her own research. That desire to understand her diagnosis was one of the many ways she took an active role in her healthcare journey.
“In order to be an active participant in your health care journey, you have to first be educated.”
Today, Emani is a psychology major at Bowie State University and is committed to sharing her journey with AMKD in the hopes that others may find comfort, inspiration and knowledge in her story. She continues to advocate for others to take an active role in their health, to ask questions, and to become educated.