What is PKD?

Polycystic kidney disease (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. 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.

There are two types of PKD: autosomal dominant PKD and autosomal recessive PKD. ADPKD is the more common type and affects more than 600,000 Americans and 12.4 million people worldwide. ARPKD is a rare form of the disease that occurs in 1 in 25,000 children worldwide.

A typical kidney is the size of a human fist and weighs about a third of a pound. PKD kidneys can be much larger, some growing as large as a football, and weighing up to 30 pounds each. The number of cysts can range from just a few to many. The size of the cysts can range from a pinhead to as large as a grapefruit.

Although the primary sign of PKD is cysts in the kidneys, there are other symptoms that can occur in various areas of the body. Learn more about PKD in the video below.

Please note: this video was created in 2015. In 2018, tolvaptan was approved by the FDA as the first treatment for ADPKD. Today, ARPKD occurs in one in 25,000 children worldwide. While ARPKD can cause death in the first month of life, almost 80 percent of ARPKD children now survive the newborn period.