We all have a story. Whether your PKD is a spontaneous mutation, hereditary, ADPKD, ARPKD or you are a caregiver to someone who has PKD, you have a story to tell. Some of us are more private than others or too sick to share, and that is OK. When I speak about my journey and raise awareness of PKD, I do so on behalf of the entire PKD community.

I held all of you close at heart last Friday evening when I had the privilege of speaking at University Kidney Research Organization’s (UKRO) Benefit Dinner about youth facing kidney disease. UKRO honored four vocal champions of kidney disease research at its gala dinner. This night of tribute raised funds for the newly opened University of Southern California (USC)/UKRO Kidney Research Center at the Keck School of Medicine of USC, in which one of the areas of research is PKD.

Below is part of the speech I delivered to the 300 guests in attendance:

“…As a kidney patient since the age of 10, it is my privilege to have the opportunity to represent and shine a light on youth facing kidney disease.

Kids around the world are born with varying forms of kidney ailments that result from inherited conditions, physical anomalies and preventable causes. In the past two decades, the incidence of chronic kidney disease in children has steadily increased. Approximately 1,200 children in the United States develop kidney failure each year. Seventy percent of adolescents with chronic kidney disease develop kidney failure by the time they’re 20 years old. Children with kidney failure are 30 times more likely to pass away than those without, and about 20 percent will pass away within 10 years of developing kidney failure.

Research, education, early detection, and a healthy lifestyle in adolescence will help fight the increase of preventable kidney disease risk factors like childhood obesity, which can lead to high blood pressure and Type 2 diabetes. Research into stem cells—going on at Children’s Hospital Los Angeles, which is affiliated with the Keck School of Medicine—also holds much promise. 

Kidney disease is a lot for a kid to endure, both physically and mentally. I don’t want future generations to have to battle the health hurdles that I have; to miss out on experiences that every child deserves; to sit on the sideline in gym class and be unable to participate in sports because their kidneys are polluted with fluid-filled cysts that might rupture; to deal with debilitating pain, dialysis and the responsibilities that come with receiving a kidney transplant.

It is amazing to see the incredible strides in research since I was a child, but so much more needs to be done, especially for adolescents whose kidney disease will impact their quality of life, at least in some way, for the rest of their days…”

Dialysis and transplantation are the only treatment options for PKD patients in the United States. Research is vital and it was awe-inspiring to be in a room full of intelligent and caring individuals, doctors and researchers who are working hard to create a better life for the kidney community.

I believe sharing our stories matters. I’m grateful to have had this opportunity and platform to use my PKD trials and voice in a positive way. I share my journey to educate, empower, inspire and with the hope that future generations will not have to endure what I have. I welcome opportunities to raise awareness of PKD through my personal experiences, because you never know who will be in the audience and how what you’ve endured will impact and inspire them to take action and help. I believe together we have the power to create a brighter and healthier future for generations to come.

I encourage you to join me in taking on PKD Challenge #26 and read the stories of others affected by PKD on the PKD Connection Blog. And, if you feel inspired to do so, share your own story and inspire others on Voices of PKD.