There is finally a reason to know if you have Polycystic Kidney Disease (PKD). While doctors are still preaching there is nothing you can do about PKD until kidney failure, there is finally a proven method to prevent the disease from being passed down to future generations.

If you have Polycystic Kidney Disease in your family, you already know the devastating toll it can take on your family’s health, with effects that include kidney failure, heart disease, and even infertility. In the past, parents with PKD were often saddled with guilt, knowing there was a 50% chance they could pass the disease on to their children. However, due to proven medical approaches, this no longer needs to be their future.

What is PKD?

For those who are unfamiliar with PKD, it is a genetic disorder that impacts over 600,000 people in the United States. PKD causes many cysts to grow on the kidneys and is the leading cause of kidney failure in individuals under 50 years.

A New Way to End PKD in Your Family

Thanks to in vitro fertilization (IVF) and preimplantation genetic testing (PGT-M), families can now ensure their children are born free of PKD. Through these methods, embryos are tested for PKD before implantation, allowing parents to choose only PKD-free embryos and, therefore, have PKD-free children.

Dr. Erica Johnstone, a reproductive specialist at the University of Utah Health, explains that PGT-M gives families hope that their children will not be affected and that future generations will be free of suffering from the disease.

Empowering Families Through Action

The PKD-Free Alliance (PKD-Free) I founded is at the forefront of this revolution. I was a kidney donor for my late wife Jo, who had PKD. This experience has driven our supporters and me toward creating a world where no one suffers like my family. I have watched this disease devastate families, including my own. Thankfully, we are now at a turning point where families have the tools to take control of their futures.

The PKD-Free Babies Program, launched by the Alliance, is already working with many families to have children free of PKD. The program offers financial grants of up to $9,000 and partnerships with fertility clinics to reduce the cost of IVF and PGT-M. “Thank you PKD-Free Alliance. Your organization provides an amazing gift to families like mine who have struggled with the generational disease of PKD. We have lost family members to the disease, and I received a kidney transplant because I have PKD. It is a miracle you have presented that now allows us to be able to stop the disease in the next generation of our family,” said Nanette Zumwalt, whose son and daughter-in-law are expecting a PKD-free baby in the spring of 2025.

Other couples echo their sentiments. “With the support of PKD-Free, my family has been blessed with an amazing PKD-free child, Juliana. It is truly wonderful for my husband, Anthony, and I to know that she will not suffer the pain and health complications caused by PKD, and neither will her children or any family members in future generations. I am proud to say that in my family, PKD ends with me,” said Natasha Rogina, mother, PKD-Free grant recipient, and recently appointed PKD-Free Alliance Spokesmom.

Breaking the Cycle in the Family Tree

Despite these breakthroughs, many doctors continue to perpetuate the outdated belief that nothing can be done about PKD until kidney failure is imminent. Justin Zanik, general manager of the Utah Jazz and a vocal advocate for PKD-Free Alliance, urges families to challenge this narrative.

Recently, during a TV broadcast, Zanik discussed the important role the PKD-Free Alliance is playing. PKD is personal to Zanik because he has it, and due to the progression of the disease, he required a kidney transplant. He was fortunate to receive a kidney in April of 2024 at the University of Utah, and he praised the sacrifice and support of others who gave him the gift of life. Zanik also shared that before learning of the PKD-Free Alliance and its mission, having kids and another generation of Zaniks was probably not something they were really thinking about because of the possibility that this disease could be passed on. He went on to speak about how he and his wife Gina are unbelievably grateful for what PKD-Free is doing, not only for his children but for future generations to come.  He believes the mission of PKD-Free is truly life-changing. Zanik pointed out that PKD-Free is making a huge impact by providing awareness, education, aid, and financial resources to families affected by the disease. He and his wife, Gina, are thankful that their children now have the answer for their future families that they did not know existed before.

Knowledge Is Power

Knowing that PKD runs in your family is no longer a grim diagnosis; it’s an opportunity to change the future. For families willing to advocate for themselves and explore advanced reproductive options, PKD-Free, and other organizations are ready to provide the tools, resources, and support they need.

Dr. Jovana Lekovich, a reproductive specialist at RMA of New York, explains that families now have the ability to rewrite their story and ensure that PKD no longer defines their legacy.

A Call to Action for Generational Health

For those living with PKD or who suspect it may run in their family, now is the time to act. Challenge your doctor if they tell you there is nothing to be done. Reach out to organizations like the PKD-Free Alliance to learn more about IVF, PGT-M, and financial support programs. Share stories of hope and success with your community to raise awareness of these life-changing options.

There is finally a reason to know if you have PKD in your family. It’s not just about avoiding disease it’s about creating a future filled with hope and health for generations. By taking control today, families can ensure a healthier and happier tomorrow, free of PKD and the suffering it causes.

To learn more about the programs, grants, and support the PKD-Free Alliance provides, visit www.pkdfree.org.

ABOUT THE AUTHOR
Richard Kellner founded the PKD-Free Alliance (PKD-Free), a non-profit organization focused on using modern genetic testing to end Polycystic Kidney Disease (PKD) by preventing it from passing down to future generations.  Richards’ commitment and passion to see an end to PKD comes from his family’s multi-generational challenges facing the disease.  PKD-Free provides grant funding for qualified families to make sure that the medical care to prevent PKD from being passed down is within the financial reach of most. For more information, visit www.pkdfree.org.