Living With PKD

September 4 marks Polycystic Kidney Disease (PKD) Awareness Day, an opportunity to help more people understand the condition and what living with it can mean for patients and families.

Many people may not realize that kidney disease is not one single diagnosis. There are many different conditions that can affect how the kidneys work, and PKD is one of them. PKD is a chronic, genetic disease that causes fluid-filled cysts to grow in the kidneys. Over time, those cysts can damage healthy kidney tissue and may lead to high blood pressure, other complications, and kidney failure.

There are two different forms of PKD. Both are inherited conditions, but the way they are passed through families and the age at which symptoms develop can be very different.

Even among people with the same form of PKD, no two journeys are exactly alike. Some people may live for years with relatively few symptoms, while others may experience high blood pressure, pain, kidney stones, or declining kidney function. More than half of people with Autosomal Dominant Polycystic Kidney Disease progress to kidney failure by age 70, which is one reason ongoing monitoring and regular conversations with a kidney care team are so important.

Treatment can also change over time. Managing blood pressure, staying active, following nutrition guidance, and monitoring kidney function can all be part of living with PKD. For some patients, medication may also be an option to help slow the progression of PKD.

As PKD progresses, conversations may eventually include kidney dialysis or kidney transplant. Starting those discussions early gives patients and families more time to understand their options and plan for what may come next.

Polycystic Kidney Disease Awareness Day is also a reminder that no family has to navigate that journey alone. The PKD Foundation has active communities in both Portland and Seattle, connecting people with education, peer support, advocacy opportunities, and others who understand what living with PKD can mean.

And on October 4^th, the 2026 Seattle Walk for PKD will bring together patients, families, friends, and supporters to raise awareness and funds for PKD research and community support. The event is also a chance for the region’s PKD community to connect in person and support continued progress toward better treatments and, ultimately, a cure.

Living with PKD can require adaptation over time, but greater awareness, ongoing care, and strong community support can help patients and families feel more prepared for each stage of the journey.