Sharron Rouse’s whole life “changed in a moment” when, at age 31, she was admitted to the hospital with kidney failure. As a new mom in what she thought was the prime of her life, Sharron originally thought her symptoms—including intense swelling in her legs—could be related to an earlier lupus diagnosis. After receiving a kidney biopsy, she was shocked to learn she had focal segmental glomerulosclerosis (FSGS), a disease that causes scarring in the parts of the kidney that filter blood. Sharron had never heard of FSGS and wondered if she had done something to cause this. It wasn’t until more than a decade later that she learned the answer: her disease was genetic. She had APOL1-mediated kidney disease (AMKD).
At first, Sharron struggled to accept her diagnosis and recalls skipping doctors' appointments to avoid facing her new reality, even as her kidney function continued to decline. After a grim warning from her doctor, she began to embrace her new situation and was determined to fight for her own health—for her own sake and so she could continue to be there for others.
“When the doctor said, ‘You’re probably not going to make it. If you get a cold, Sharron, you’re probably going to die,’ I thought about my family, and my husband, and my daughter. That was a turning point for me. This is really life or death.”
With her family rallying around her, Sharron began to educate herself about her disease and get into the driver’s seat of her health.
Despite working with her doctors to manage her disease, due to the genetic nature (which they didn’t know at the time), Sharron’s kidneys continued to decline as her treatment regimen could only do so much to slow the progression. Within a few years, Sharron was told that she would need to go on dialysis, a medical procedure that replicates the kidney’s function by pumping a person’s blood through a filter in order to clean out waste and excess fluid from the blood. Dialysis took a physical and emotional toll, and Sharron and her doctors decided to pursue a kidney transplant.
Sharron’s sister Shonte’ didn’t hesitate to offer to be her donor, and the two very close sisters began to navigate the complicated process together. The journey to their transplant was long and uncertain, however, their bond grew even stronger when they finally headed in for surgery. The transplant was a success, but Sharron’s story didn’t end there.
Years later, Sharron learned about the gene APOL1, and that certain genetic changes (known as “risk variants”) were linked to increased risk of kidney disease. An at-home genetic test confirmed that she had the APOL1 risk variants, and that her FSGS was indeed caused by a genetic condition called AMKD. This newfound clarity helped drive her to continue raising awareness of this underdiagnosed disease.
“Going through genetic testing, getting more information, participating in clinical trials: things like that are the keys.”
Today, Sharron is an active kidney health advocate supporting other patients and families going through similar journeys through her own nonprofit, Kindness for Kidneys. When she looks back on her own story from symptoms to diagnosis to transplant, Sharron highlights how her family provided such a crucial support system for her. She aims to offer others that same compassion through her work.
Hear more of Sharron’s story, what prompted her new outlook on being active in her own health, and how her family has supported her—both emotionally and physically—as she navigates her disease.