Nayan's AMKD Story
Nayan was first diagnosed with kidney disease in 2005 after chronic headaches and high blood pressure prompted him to seek out answers from the doctor. After a kidney biopsy in 2006, he was told he had focal segmental glomerulosclerosis (FSGS). Between 2006 and 2011, he was monitored closely while his kidney function declined very slowly. Unfortunately, in 2011,treatment for an infection accelerated the damage to his kidneys and they continued to decline. In 2014, his kidney function reached 7% and he began dialysis treatments. Nearly a decade later, Nayan was placed on a transplant waitlist. As part of that process, he was encouraged to receive genetic testing to find the cause of his FSGS and discovered he has APOL1-mediated kidney disease (AMKD). When he received the news, Nayan said his "mind was blown."
"The person just explained everything about this genetic thing to me," said Nayan, "and in one word it was a shocker to me because I had never heard anything about that before."
Nayan expressed that he wished he had learned this earlier, perhaps even when he was first diagnosed.
"The fact that I could have known that I was predisposed to a kidney disease was the hardest part for me," Nayan explained. "I wondered, 'why didn't someone do this when I presented kidney issues?' … Even as a teenager, I think that news would have hit me a little bit more in the core and have me shift on my axis a little bit more. That knowledge, I believe, would have helped me if I knew it a little bit earlier."
Now, Nayan encourages others to learn from his experience and get all the information they can about how their genes could impact their health.
"Knowledge straight up is power," said Nayan. "So, for me, bringing the awareness of this allows people to plan ahead and not just, I would say, fall victim to a kidney disease without like even knowing when they could have known something before. Also to help your family members if they may be predisposed to it, you know, it's like you don't want to not know something."