March 19, 2024
Meet five inspiring Voices for Kidney Health advocates at the forefront of the battle for kidney equity. They faced kidney disease head-on, and now they're helping lead the charge for KIDNEY EQUITY FOR ALL™.
1. Isha Triguero
Isha's life took a drastic turn when she was diagnosed with lupus at sixteen. Six months later her kidneys failed. She spent the remainder of high school and college balancing school and hemodialysis. After graduating college, Isha’s mother donated a kidney, granting Isha a second chance at life. But Isha was knocked off her feet again when life dealt her a cancer diagnosis.
Unfortunately, the cancer treatment hit her new kidney hard. Isha won her cancer battle but had to return to the transplant waitlist. During that process, she experienced another blow–racism.
“My kidney disease support group has many white members. I love them, but their story is very different from mine. One person was listed within 3 weeks at the same center where it took me six months. My coworker, who is Asian, also struggled to get listed at this center,” said Isha.
While Isha received another transplant, this experience motivated her to become a Voices for Kidney Health advocate.
“Chronic kidney disease affects many Hispanic/Latinos and Black/African Americans. I hope to make a difference by educating lawmakers about health disparities, kidney disease, and kidney transplants.”
Everyone who needs a kidney deserves a fair chance to get a transplant. NKF is on a mission to make this goal a reality. Sign NKF's Equity Spotlight Petition to help more people get the life-saving transplants they need.
2. Lance Mason
Lance Mason's kidney disease journey began long before his own diagnosis. Both of his parents spent time on dialysis and received kidney transplants but Lance never expected to become a kidney patient himself. But then he was diagnosed with kidney failure at the young age of 21. Eight months later, a living kidney donor gave Lance a second chance at life and Lance became a Voices for Kidney advocate to pay the gift forward.
"Millions of people around the world suffer from what my parents and I suffered from. I want to do something to help,” said Lance. “As a Voices for Kidney Health advocate, I fight for bills that improve transplant and kidney disease funding. The amount of funding that kidney disease research receives does not equal the number of people that suffer from this disease.”
Tell Congress to increase kidney disease research and funding.
3. Kam Shenai
Kam Shenai was diagnosed with stage 5 kidney failure in the summer of 2020. Facing dialysis, Kam wrote an essay titled "Eighty-Eight Hours," aiming to change the perception of dialysis from a death sentence to a gift of life. Post-transplant, Kam shifted his advocacy focus to legislative change, pushing for the Living Donor Protect Act which protects living donors from insurance discrimination.
“If my advocacy makes a difference in one life, my effort is worth it. So, “making a difference even in one life” became my mantra,” said Kam. “My life was changed because of an individual who had signed up for his organs to be donated after his passing. I remain ever grateful to him for allowing me to live.”
Support NKF’s Living Donor Protection Act.
4. Jess Walters
Doctors spent Jess Walters’ childhood trying to figure out why their kidneys weren’t functioning properly. At sixteen they were formally diagnosed with Alport Syndrome, which damages the tiny blood vessels in the kidney, can lead to hearing loss, and affects eyesight. This diagnosis was challenging to obtain because many believe women and those assigned female at birth are only "carriers" of Alport Syndrome and won’t or rarely experience kidney failure. Jess began their advocacy journey with the hopes of making the Alport Syndrome diagnosis more inclusive.
“There has been a recent battle to change the language defining Alport Syndrome so that females are not represented as "carriers." It's been difficult because males typically have more prominent characteristics or outward appearances of the disease like the late onset deafness in adolescence and kidney failure,” Jess said. “If how we perceive gender and sex in science didn't rely on the binary, I may not have been misdiagnosed and had access to drugs that could have protected my kidneys.”
Jess’ advocacy journey hasn’t stopped there, though.
"When my kidneys failed, I became one of the small percent of people given access to peritoneal dialysis (PD) in lieu of in-center hemodialysis. I know people on dialysis who don’t know what PD is because they were never given the option to do it.”
A few months later, Jess’ dear friend donated a kidney, giving them a second chance at life.
“I use my story as a platform to share information about barriers to healthcare access, especially organ donation. I got this transplant due to a wealth of privilege and feel it is my moral obligation to use this bonus time to make people understand some of these larger frameworks."
Sign our Improving Access to Home Dialysis Act to help more people receive dialysis in the comfort of their own homes.
5. Janet Tennyson
Janet Tennyson learned she had stage 2 kidney disease during a routine ultrasound for hernia surgery. After this unexpected diagnosis, Janet uncovered systemic biases in medical testing, specifically the use of race in determining kidney function. Despite the widespread adoption of a new race-free test, Janet was shocked to learn her kidney function was estimated using the old race-based formula. She fought to get retested and her persistence paid off. Janet was correctly diagnosed with stage three kidney disease, ensuring she will have better access to the transplant waitlist should the need arise.
“I wasn’t afraid to advocate for myself but what about those who don’t have the resources? I hope to continue making a difference by sharing my story and inspiring others to share theirs,” said Janet. “I also feel a sense of duty to fight for those advocates behind me who are sick. Kidney disease is progressive and there is a chance I’ll need someone to fight for me in the future.”
Do you want to make a difference, like Janet? Become a Voices for Kidney Health advocate.
