ADPKD is a painful condition that can significantly affect quality of life. While a typical kidney is about the size of a human fist, polycystic kidneys can grow much larger—sometimes reaching the size of a football and weighing up to 30 pounds each.
Unlike some genetic diseases, ADPKD doesn’t skip generations, which means it often impacts multiple members of a family. About 10% of people diagnosed with ADPKD have no family history of the condition; this is called a spontaneous mutation. Once someone has ADPKD, whether inherited or from a new mutation, there’s a 50% chance they will pass it on to each of their children.
ADPKD Patient Handbook
The ADPKD Patient Handbook provides clear, easy-to-understand information about autosomal dominant polycystic kidney disease (ADPKD). It’s designed for people living with ADPKD, those who may be at risk because a parent has the disease, and family members or friends who want to learn more. (This handbook is not intended for those affected by autosomal recessive polycystic kidney disease, or ARPKD.)
- ADPKD is the more common form of polycystic kidney disease, occurring in approximately 1 in 500 to 1 in 2,000 people.
- It's the fourth leading cause of kidney failure.
- Because parents have a 50% chance of passing the disease to their children, ADPKD often affects several members of the same family.
NEW! When you order the ADPKD Patient Handbook, you’ll also receive a digital link to the companion guide — Understanding KDIGO 2025 ADPKD Clinical Guideline: A Plain Language Guide.
This guide was created by the PKD Foundation to help patients, care partners, and families understand the latest medical recommendations for ADPKD. It summarizes the key points from the KDIGO 2025 Clinical Practice Guideline in plain language and supports shared decision-making with your healthcare team.
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