Living with polycystic kidney disease
By MaryKatherine Michiels-Kibler
This article originally ran in the August 2014 issue of Kansas City Health and Wellness magazine.
Five years ago, at age 13, I was diagnosed with polycystic kidney disease (PKD) after a series of visits to the emergency room with severe abdominal pain and vomiting. PKD, which causes cysts to grow on the kidneys, eventually leads to kidney failure and can cause a kidney to weigh up to 30 pounds. I am the youngest person in my family to be diagnosed. PKD is a genetic disease and parents with PKD have a 50 percent chance of passing the disease to each of their children. My mother, grandfather and great grandfather all have PKD.
Unwilling to accept feeling powerless
Not only did I find out I had a genetic disease with no treatment or cure, I also had to learn it was a disease that despite affecting thousands in the U.S. and millions world wide had many unknowns and inconsistencies.
While as a young teenager all I wanted to do was ignore this imperfection I realized that because I was diagnosed at such a young age, I had the opportunity to help.
Unwilling to accept the feeling of powerlessness when facing PKD my mom and I turned to The PKD Foundation, an organization solely dedicated to finding treatments and a cure for PKD, to get involved in a brighter future for the disease.
Shortly after I was diagnosed with PKD in 2009, I attended the PKD National Convention in Chicago, which is where I learned about a clinical trial for youth ages eight to 22. Because there is no treatment or cure, PKD research and clinical trials are critical elements to finding ways to slow down and stop the progression of this debilitating disease, which affects thousands of children and adults in the U.S. and millions worldwide.
Adamant about finding a treatment and cure, I decided to participate in a clinical trial conducted by the University of Colorado School of Medicine. After three years of taking Pravastatin, a repurposed cholesterol medication, and three visits to the Children’s Hospital in Denver, Colorado the results were positive showing that Pravastatin is an effective agent in slowing the progression of the cysts. This is the first positive finding for children suffering from PKD. Playing a small role in the first positive finding for children with PKD truly made me feel like I was a part of something bigger, something that will benefit generations to come.
I do not know what lies in the future for my battle with PKD. I do know that through my participation in clinical trials and the PKD Foundation’s advocacy efforts, paired with the progress already made in the five years since I was diagnosed, those with PKD in the future will not have to hear the devastating words, ‘there is no treatment or cure.’