Sometimes people think if they put blinders on something will vanish. If they don’t speak of it they will not have to deal with it like others. Unfortunately, some things will not go away, nor get better by avoiding them. Coming to terms with having a life threatening genetic disease such as PKD is difficult for some. We watch our family members endure its side effects and hope the path would be different for them and for us. I believe there is a fine line between those of us who live in denial of having PKD and those of us who use our voice to guide and comfort us on our journey with PKD.

Last month on World Kidney Day, I had the privilege of sharing the stage with Dr. Robert Weiss, MD. Dr. Weiss is Professor of Medicine, Division of Nephrology and Cancer Center, Department of Internal Medicine, UCDHS, Chief of Nephrology, Mather VA. He asked me to join him in speaking to the Grand Rounds Department of Internal Medicine at UC Davis Medical Center in Sacramento, California on “New Insights and Research in Polycystic Kidney Disease.”

As I sat among the crowd of more than 150 medical students, doctors and professors, I had a moment of reflection. I listened to Dr. Weiss discuss all aspects of PKD — from diagnosis to its symptoms; how it can greatly affect the course of someone’s life; and the current trials taking place to find a treatment and hopefully a cure. A lot of medical and scientific terms were used, but the message was clear and the presentation really hit home. Dr. Weiss used a picture of an MRI of my kidneys prior to their removal and I was reminded of the grand impact PKD has had on my life and so many others. As I intently listened to the presentation, I tried to put myself in the shoes of someone who has just been diagnosed with PKD. I have lived with PKD for more than 20 years, but I can understand how scary all of this would seem to a person newly diagnosed.

As I approached the podium to speak, I was grateful to have the opportunity to share my PKD history with an audience that is playing a positive part in the future of PKD. Dr. Weiss wanted me to share my diagnosis, symptoms, family history, PKD timeline, and lessons they could learn from my experiences. I expressed to them that you can’t always make assumptions based on family history because I followed a completely different path than my family members. How it is important to check blood pressure in children, as that is how I was diagnosed at 10 years old. Also, there are some effects of PKD that are not always thought about or discussed. Like self esteem issues, anxiety, depression, being faced with your own mortality, the impact of watching other family members endure the disease and the thought of passing it on to your children.

I expressed my thoughts that these things are not always thought about or discussed because PKD is usually a slow progressing disease compared to something aggressive like cancer. A doctor might not think to look for signs of depression and anxiety. Or the concerns parents have of wondering if their kids have PKD and if they should or can test their children. I shared with the audience that although PKD patients may only have yearly check-ups, as their lab levels are stable, I believe it is important to have compassion for the personal and emotional impacts of PKD as patients navigate through their individual journeys. I encouraged the doctors to let their patients know there is support out there for them.

Left photo: A slide from the presentation which shows an MRI of normal kidneys compared to the MRI of my kidneys. Right photo: Dr. Weiss and I are standing next to an MRI of my kidneys prior to their removal.

Whether slow progressing or not, PKD continues to affect people through each chapter of life. Using my voice while living with PKD has helped ease me through each phase of this disease. I’ve met many with PKD who are not outspoken, yet others who are helping to be the voice for all of us. Whatever your comfort zone may be, there is an avenue for each of our voices. Whether that is asking questions at our doctor visits to stay well informed and take the best care of ourselves; to be open with family members and friends about what we are going through; to comfort those enduring PKD; to share our story to small or large groups to raise awareness; to help a local chapter, support group; or Walk for PKD.

As I spoke to 150 influential individuals eager to learn about PKD, I had a wonderful out-of-body experience. It felt as if I was watching the presentation happen rather than living it. I was thankful for all that I have endured and the opportunity to share my experiences to educate and hopefully help the future for all of us. Please know that our individual voices have a huge impact whether it is to a large group or from one individual to another.

How have you used your voice during your journey with PKD? If you have not, would you be willing to open up and share why?

If you are inspired to share your PKD story, the PKD Foundation launched Voices of PKD, which is to help raise awareness and tell the story of PKD through the eyes of the PKD community. You can submit your story through their webpage, pkdcure.org/voices or through their Facebook page facebook.com/pkdfoundation/app_271955199614285.