Using Your Voice to Spread PKD Awareness

Using Your Voice to Spread PKD Awareness header image

Published on September 5, 2023 | Today, we celebrate PKD Awareness Day. While polycystic kidney disease (PKD) affects millions of lives worldwide, yet its awareness often remains overshadowed by more well-known health concerns. Every September 4, PKD Awareness Day serves as a crucial opportunity to educate, advocate, and inspire change. It’s a day to rally together, raise our voices, and amplify the message that PKD deserves recognition, research, and support.


Understanding the Basics of PKD

Polycystic Kidney Disease is one of the most common, life-threatening genetic diseases. Its characterized by the growth of numerous cysts on the kidneys, which over time can lead to kidney failure and other complications. To spread PKD awareness, you need to understand its two forms.

Autosomal dominant polycystic kidney disease (ADPKD), the more common type is the fourth leading cause of kidney failure. More than 50% of people with ADPKD will develop kidney failure by age 50. And because its a genetic disease, patients face a 50% chance of passing it on to their children.

Autosomal recessive polycystic kidney disease (ARPKD) is a rare genetic disorder occurring in approximately 1 in 25,000 children. It affects boys and girls equally. While ARPKD can come as a scary, overwhelming diagnosis, the prognosis has changed dramatically.  Though it can still cause death in the first month of life, almost 80% of ARPKD children survive the newborn period. And more than 90% of children who survive the newborn period reach their 20th birthday, and 50% of these survivors don’t yet require dialysis or a transplant.


The Power of Personal Stories for PKD Awareness

Sharing personal experiences can be a transformative tool for generating PKD awareness. Each journey is unique, offering insights into the challenges, triumphs, and day-to-day realities of life with PKD. By opening up and sharing these stories, individuals can foster a sense of connection in their PKD community, while also enlightening the wider public about the impact of the disease.

Meet John and Lana Anderson

At PKDCON 2023, PKD Foundation staff had the opportunity to hear incredibly powerful stories from the PKD community. One such story came from John and Lana Anderson.

“PKD runs in my family. My grandpa had PKD; he passed away at 24. My mom passed away at 36,” John shared. “When my mom was still alive, I passed my first kidney stone at about six. And so my mom knew that I was on that journey, too.” Hear the rest of his incredible journey with PKD below.

How You can Spread PKD Awareness 

Sharing your PKD journey might seem intimidating, but the impact is immeasurable. Whether through social media, blogs, support groups, or emails to Congress, your voice matters. Start by reflecting on your journey. Focus on the challenges you’ve overcome, the lessons you’ve learned, and the hopes you carry for the future. By telling your story, you help put a face to this disease and highlight why supporting a path to a cure is so vital.

Before PKD Awareness Day ends, let’s take this opportunity to stand together and raise our voices for change. Let’s elevate awareness and pave the way for increased support, research, and understanding. With every story shared, awareness grows, connecting more members of the PKD community and beyond together to end PKD.


1 Comment

  1. Kris Lovato

    Amazing story of how God Works in mysterious ways🙏🙏
    I had a kidney transplant 20 years snd 41/2months ago not from pkd but still a very successful transplant at Porter Hospital in Denver, CO.
    I KNOW without a shadow of a doubt that God had His mighty hand in my situation also🙏🙏


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