September is here, and with the excitement for cooler weather and the fall leaves comes our annual opportunity to shed light on Polycystic Kidney Disease (PKD), with a focus on the patients and families that it impacts throughout the Pacific Northwest and around the country.
As one of the four leading causes of kidney failure in the United States, PKD is a genetic disease (passed from an affected parent to their child) causing uncontrolled growth of cysts in the kidney eventually leading to kidney failure. There are two types of PKD, the most common being autosomal dominant polycystic kidney disease (ADPKD). In ADPKD, fluid-filled cysts develop and enlarge in both kidneys.
More than 50 percent of people with ADPKD will develop kidney failure by age 50 – and once a person has kidney failure, dialysis or a transplant are the only options. ADPKD affects more than 600,000 Americans and 12.4 million people worldwide.
Early education efforts will lead to earlier recognition of symptoms and diagnoses of PKD, and better patient outcomes.
While the disease affects all races and ethnicities equally, data suggests African Americans suffer worse outcomes due to delayed diagnosis, slower referrals to nephrology specialists than their white counterparts, and earlier progression to end-stage renal disease as a result.
People who have chronic, life-threatening diseases like PKD have a predisposition to depression and are more likely to experience thoughts of suicide due to their anxiety over how to manage the disease and its impacts. If you have these feelings, it’s critical to talk someone. Here’s a place to start.
Overall, PKD awareness empowers patients and families to seek diagnosis, support, and appropriate treatment. That is why we must keep highlighting this disease and ways in which it can be managed.
The PKD Foundation has fantastic resources for anyone dealing with this difficult diagnosis, including tips on how to maintain a healthy lifestyle, connect with a care team, and advocate for research. Check out their website to get started.
Across Oregon and Washington, Northwest Kidney Council will be celebrating PKD awareness month all September long. We encourage you to follow along with our social channels (@NWKidneyCouncil), keep up with the hashtag #endPKD, and share resources to increase awareness and education around PKD.