From Childhood Kidney Disease Diagnosis to Kidney Doctor

Health systems, social systems, and environmental factors Healthcare system navigation and patient advocacy Patient advocacy

July 11, 2024

Dr. Ken Sutha's kidney disease journey began at the age of ten. His experiences navigating kidney disease, undergoing multiple kidney transplants, and dedicating time to volunteer with children facing similar challenges shaped his career path as a pediatric nephrologist and fueled his advocacy efforts for kidney patients nationwide.

Diagnosed with FSGS

When doctors found an abnormal amount of protein in Dr. Sutha’s urine, they diagnosed him with childhood nephrotic syndrome.

“I didn't respond to the normal treatments,” Dr. Sutha said. “Further testing revealed I had FSGS, focal segmental glomerulosclerosis, or scarring of the kidneys.”

With care from his healthcare team and medication that reduced the amount of protein in his urine, Dr. Sutha maintained his kidney function for more than a decade.

“My kidneys failed in 2006 in my second year of medical school. I needed a transplant or to start dialysis,” Dr. Sutha said. “Fortunately, my dad donated a kidney to me, which allowed me to do so many great things. I finished my M.D. and PhD.  I competed in the Transplant Games, then hosted by the National Kidney Foundation, and volunteered at a camp for kids with kidney disease.”

The transplant lasted for ten years before failing. 

“I started peritoneal dialysis, a form of home dialysis, in 2016. This allowed me to continue working full time, training to become a pediatric nephrologist,” said Dr. Sutha. “I passed the American Board of Pediatrics in 2017 and received my second kidney transplant in 2018 from a deceased donor.”

Today, Dr. Sutha is thriving, all thanks to two life-changing kidney transplants. 

Learn more about becoming a kidney donor with NKF’s free online course.

Helping Children with Kidney Disease

While many think that Dr. Sutha’s career choice resulted from his own experience, it was actually inspired by his time volunteering at camp.

“Volunteering with kids who have kidney disease inspired me to do this work. I can be the example of a person living with kidney disease and a transplant that I didn’t have growing up,” Dr. Sutha said. “I understand the challenges kids go through, like fitting medical care into their school schedule. I know the power of transplants and the day-to-day experiences of a transplant patient. My career and passions aligned.”

In 2020, Dr. Suth officially became a Board-Certified Pediatric Nephrologist. While he doesn’t always disclose his experience with kidney disease and transplantation, it does impact how he interacts with patients and other pediatric nephrologists.

“I have insight into my patients' experience and what barriers they may experience,” Dr. Sutha said. “My story impacts my colleagues as well. As doctors, we usually see people at their sickest–not in real life when they are living to the fullest. It’s important that my colleagues see me, a transplant recipient, thriving. It reminds them that the ultimate goal for our patients is to help them achieve everything in life they want to do.” 

If you have a child with kidney disease, support is available. Join NKF’s free online community for parents and guardians. 

Becoming a Voices for Kidney Health Advocate

Dr. Sutha high fiving Voices billboard

Dr. Sutha understands the power of shared experiences. It’s what makes him a fantastic nephrologist, colleague, and Voices for Kidney Health advocate. 

“I got involved with Voices for Kidney Health, NKF’s advocacy group, during my pediatric training. It was an opportunity to share my perspective as a physician who takes care of people with kidney disease and as a transplant recipient with lived experience,” Dr. Sutha said. “Empowering patients to share their stories allows us to connect as a community and make a difference in legislative advocacy.”

As a kidney advocate, Dr. Sutha has:

“Our stories are the arguments for improvements in state and national legislation related to kidney health. When people get involved, it puts a face to the bills we want our legislators to pay attention to,” said Dr. Sutha. “Lawmakers are ultimately here to serve us. They are meant to be our voice, but they won’t know what we want unless we directly express it to them.”

While advocating for change, Dr. Sutha has also expanded his own network.

“I’ve made friends with my fellow advocates. We have an online community that allows us to connect with other people passionate about kidney health,” said Dr. Sutha. “It’s great to have that support system–especially during my dialysis journey–and to be that support system to other people.”

Want to make a difference like Dr. Sutha? Join Voices for Kidney Health today.