On our PKD journey, patients and researchers search for many answers, all with the common goal of discovering a cure. We patients may search to find out why we have this disease, what we can do to lead the healthiest lives, where we can obtain the best care or when we will see the day a treatment is available for us. PKD researchers search tirelessly to learn every facet of polycystic kidney disease and discover the long-awaited key that will unlock finding a treatment or cure.
Research is important to me as a way to honor loved ones I’ve lost and to help improve the lives of my family, the PKD community and all affected by this disease. Research will change the course of PKD for future generations, meaning others won’t have to suffer like I have. Research opens up the possibility for those diagnosed young like me to have a richer youth, less pain, less worry and opportunity for a better life. I want to be a part of this positive change. I want be an active participant. I want to make others proud and show my living kidney donor that her gift is helping so many.
Since I had both of my kidneys removed when I was 18 years old and a transplant 13 years ago, I do not qualify to participate in the current trial, called REPRISE, to study the safety and effectiveness of tolvaptan as a treatment for ADPKD in the U.S. However, I did have the privilege of participating in a trial this year at the Mayo Clinic, “ADPKD Modifier Study and CRISP III Study – Identify the Relationship Between Genetic Markers and Disease Severity in Patients with Autosomal Dominant Polycystic Kidney Disease.”
The purpose of the study I took part in is to identify genetic factors that may influence the severity of PKD. Since my PKD has been quite severe, I thought this would be a perfect fit for me. All I had to do was fill out a family history document and have blood drawn. It was quite easy, yet very gratifying to be able to participate. I felt excited as I sent my test kit off to the Mayo Clinic, knowing I was able to take part in a trial and do my part as a patient.
We patients are the answers to many questions. Our participation in studies and trials is vital for the researchers to fill in the blanks, connect the missing links and decode the mysteries of our disease. It takes great effort from each of us. As we continue to search for a cure, let’s do all we can to help the researchers get one step closer to changing the lives for all affected by PKD.
Have you participated in a PKD trial? If so, please share your experience below.