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Polycystic kidney disease (PKD): the types, the signs, the tests, and slowing it down
For anyone just told they have polycystic kidney disease, anyone with PKD in the family, and the parents of a baby who may have it. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK, part of the NIH) says PKD is a genetic disorder that causes many fluid-filled cysts to grow in the kidneys, and that it affects about 500,000 people in the United States. This page passes on, by name, what NIDDK says: what PKD is, the two types and the genes; the signs and what it can lead to, from high blood pressure to brain aneurysms; the imaging and genetic tests, and genetic counseling; pain, blood pressure, kidney failure, and the day-to-day steps that may slow it; and the rare type found in babies. It builds the words to say and the questions to ask, and prints a card to keep with you.
A word with a dotted line under it, like this, opens its official definition, quoted from a U.S. government glossary.
Right now
- A sudden, severe headache, or a headache with confusion, weakness, trouble speaking or fainting? Trouble breathing? Call 911 (ours). NIDDK says brain aneurysms can happen with PKD, and large ones need immediate treatment.
- Blood in your urine? NIDDK says see a provider right away. Back or side pain with a fever or chills? Call your provider that day (ours).
- Thinking of taking a pain medicine? NIDDK says ask a provider before any over-the-counter medicine, because some can harm the kidneys.
- Worn down, or thinking of ending your life? Call or text 988, any hour (ours).
More help
- The kidneys, on this site: Kidney disease · Kidneys, bladder and urine: find the right page · Kidney disease in children · Blood in the urine · Kidney stones.
- Tests: Urinary tract imaging · Medical tests: find the right page.
- Related: High blood pressure · Blood pressure log · Stroke · Quit smoking.
- Getting ready: My medicines list · Get ready for your appointment.
- Care and costs: When you need a doctor and can’t pay · Medical bills.
- In a crisis: Help right now (988, 911). All our free tools.
Kidneys, bladder or urine, and not sure this is the right page? The pages on this site for bladder infections, kidney stones, blood in the urine, bladder pain, bladder leaks, the prostate, kidney disease and bedwetting, on one list.
Other guides on this site that go with this page
Free to read. We chose these ourselves; no professional did. Each guide was written with AI and has not been reviewed by a professional. They are general information, not advice.
- Nephrotic syndrome: in adults and in children: nephrotic syndrome in adults and in children (swelling, foamy urine, protein in the urine): what causes it, the signs and what it can lead to, the urine and blood tests, the treatment, and steroids and relapses in children.
- Glomerular disease: the signs, the causes, the tests, and the treatment: glomerular disease (FSGS, lupus nephritis, membranous nephropathy, minimal change disease and others; foamy or cola-colored urine, swelling, or a kidney biopsy that showed it): what it is, the causes and who gets it, the signs and what it can lead to, the tests and the biopsy, the kinds of medicine and kidney failure, and food, family and research.
- IgA nephropathy (Berger’s disease): the signs, the biopsy, and the treatment: IgA nephropathy, Berger’s disease (pink, cola-colored or foamy urine, swelling, or a kidney biopsy that showed it): what it is, who is more likely to have it, the signs and what it can lead to, the tests and the biopsy, the kinds of medicine and less salt, and food, family and research.
- One kidney (a solitary kidney): the checkups, keeping it safe, and giving a kidney: one kidney, a solitary kidney (born with one, had one removed, or gave one): the three causes, what it can lead to, the urine, blood and blood pressure checkups, medicines and sports, pregnancy, and giving a kidney.
This page and its wording were written with AI (Claude) for Scarlet Beast (our AI policy). No doctor or nurse has reviewed it. The facts were read on October 18, 2026 on NIDDK’s (NIH) pages on Polycystic Kidney Disease (PKD): What is PKD?, Autosomal Dominant PKD, Autosomal Recessive PKD, and Eating, Diet, & Nutrition for PKD (last reviewed January 2017). Those pages are not new, and your provider may know newer tests and treatment. NIDDK has no Spanish version of them, so our Spanish page is our own AI translation. The numbers (about 500,000 people in the U.S.; 1 in 400 to 1,000 people; 1 in 20,000 children; diagnosed between 30 and 50; 1 in 6 or 7 with PKD2; more than half reaching kidney failure by 70; cysts a half inch or larger; a blood pressure goal of less than 120/80; 30 minutes of activity; 7 to 8 hours of sleep; about 30 percent of newborns with ARPKD) are NIDDK’s. Ours: 911 for a sudden, severe headache or one with confusion, weakness, trouble speaking or fainting, and for trouble breathing; calling your provider that day for back or side pain with a fever; asking about newer treatment; asking about insurance before genetic testing; that a gene is no one’s fault; 988 when it is too much; health centers when money is tight; and the order of the steps. What we left out: the names of the two over-the-counter pain medicines and the medicine-name endings NIDDK gives, the references, the clinical trials box, and NIDDK’s outside links. This page saves nothing and loads no trackers.