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.
Valen’s grandmother passed away from PKD.
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.
For additional information about participating in clinical trials, read what the PKD Foundation has to say. You can also learn more about the Mayo Clinic trial I participated in.
Have you participated in a PKD trial? If so, please share your experience below.
A new study came out today for people with pain and PKD. I’m sure it’s available on the PKD website.
I’m urging everyone who can to participate in taking this short survey and do your part to
help END PKD.
Thank you for sharing this, Cathy!
I participated in the HALT and CRISP PKD study at Rochester Mayo for several years and then the tolvaptan study until my numbers got to high to be in the study anymore. The least I could do for PKD research to help future generations! Free top of the line health care for me and helpful information for everyone in the future!
Thank you for participating in trials Lana and for sharing your positive experience and thoughts with us.
Your grandma was a beautiful woman, Valen! I think you got her smile:)
I have been participating in the Kadmon study for a year and 2 months now. It takes a big commitment since I must take time off work for my monthly appointments, get up very early (4:30 am) to beat traffic when driving the distance, make special school carpool arrangements for our kids, and much more. However, I am totally thankful for the opportunity to help, one day, make a medication that will stop PKD. Meanwhile, I am under care of a wonderful nephrologist and his team.
I participate because deep inside I hope that the trial will help me get better and also help others. I don’t see doing nothing an answer to ending PKD. I also find it important to set a positive role model for my kids as I face PKD straight on, one day at a time.
Ever searching and REsearching,
Karin
Hi Karin!
Aw, that means a lot, thank you! I never met her. She passed before I was born.
Thank you for your commitment and dedication to help by participating in a trial.
I appreciate you sharing your heartfelt reasons of why you take part in the study. You are definitely setting a positive example for your kids and all of us. Love your signage, “ever searching and researching.”
Hope you are having a wonderful weekend!
-Valen
Happy Saturday to you, Valen!
I did not meet my paternal grandma either since PKD took her before I was born. I actually didn’t learn the true reason of her early passing until I shared with my mom, five years ago, that I have been diagnosed with PKD. That’s when I also learned the true illness of a paternal aunt. Unfortunate circumstances based on pure ignorance and fear, to say the least.
Fear is a terrible thing. I want the opposite for our teens. I want them to grow up knowing that it’s okay to be afraid, mad, sad, and uncertain about mom’s health as long as we try our best to keep the lines of communication open with honesty, support and compassion. It is not easy but I wish I would have had that when I was growing up.
Thank you for your positivity:)
P.S. Feel free to email me directly since I don’t do Facebook. I see it’s not published but, do you have access to it? No pressure there, only a suggestion.
Hi Karin! 🙂
You are doing a fantastic job of handling our disease in a positive way and setting such a wonderful example for your children. I have learned how important it is to let our emotions out and to have an open line of communication with our loved ones. I believe this leads to healthy and strong relationships when living with PKD. I just sent you an email! 🙂