Emani's AMKD Story
Emani was a senior in high school when she was rushed to the emergency room with severe stomach pain. She was surprised to discover that the cause of her pain was her kidneys. She decided to do a kidney biopsy right then in the hospital and from that test, she learned that she had a rare genetic form of kidney disease called focal segmental glomerulosclerosis (FSGS).
"Knowing that it's genetic, and knowing that I'm taking care of myself, makes a big difference in my mental state," said Emani. She spent the next year trying different medicines and treatments to help slow the progression of her kidney disease, but nothing was working. It was then that her nephrologist recommended additional genetic testing to see if her FSGS was the result of APOL1-mediated kidney disease (AMKD). The test confirmed it was.
Now, Emani is an outspoken advocate, doing what she can to spread awareness of AMKD. "A lot of people don't even know about how prevalent the APOL1 gene variant is in the African American community," said Emani. She has spoken to legislators on Capitol Hill about AMKD, was a speaker for AKF's Kidney Action Week® and has had her story shared in both PEOPLE and Essence.
"Your genes are telling you a story of what did happen, is happening and what could happen," said Emani. She encouraged others to advocate for themselves and be proactive about their kidney health.