Sharron's AMKD Story
When Sharron noticed some swelling in her legs after dropping off her daughter at school one day, she assumed it was related to her high-risk pregnancy or lupus diagnosis. She was shocked when the nurse told her that her kidneys were failing. After a biopsy, Sharron learned she had focal segmental glomerulosclerosis (FSGS). "I was scared and frustrated, but research helped me understand the disease, its effects and that I was not alone," Sharron said, who was just 31 years old at the time.
Years later, Sharron's kidney function reached the point that she needed dialysis treatments to survive. Sharron said dialysis took both a physical and emotional toll on her. Fortunately, her sister volunteered to donate one of her kidneys to Sharron. After a successful transplant, Sharron heard for the first time about the connection between APOL1 gene mutations and kidney disease. She decided to take an at-home genetic test and learned that she did, in fact, have the high-risk variants. Her FSGS was the result of APOL1-mediated kidney disease (AMKD).
"The diagnosis liberated me from the uncertainty and anxiety of having done something in my youth that could have caused all of this," said Sharron, "and it alerted me to the seriousness of the disease and its effects."
Because of her experience with kidney disease, Sharron became the founder and executive director of Kindness for Kidneys International, Inc. She is now an active advocate for the kidney community and is helping to spread awareness of AMKD. "I hope that my story helps those who are struggling to understand their diagnosis and how to navigate the difficult times of dealing with kidney disease," said Sharron.