Skip to main content

Rare kidney & urinary condition

Autosomal dominant polycystic kidney disease

ADPKD is the commonest inherited kidney disease, in which fluid-filled cysts progressively enlarge both kidneys; modern care combines blood pressure control, tolvaptan for suitable patients and family screening.

Key points

The essentials at a glance.

What to look out for, how the diagnosis is confirmed, who looks after it, and the options that exist.

  • 01

    Each child of an affected parent has a 50% chance of inheriting it; PKD1 disease is generally more severe than PKD2.

  • 02

    Diagnosis is usually by ultrasound with age-specific criteria; genetic testing resolves uncertain or atypical cases.

  • 03

    Rigorous blood pressure control is the foundation of care.

  • 04

    Tolvaptan slows cyst growth and kidney function decline in adults at risk of rapid progression.

  • 05

    Associated features include liver cysts, heart valve changes and - in families with a history - brain aneurysms, for which screening is selectively offered.

  • 06

    Kidney size (total kidney volume) and eGFR trajectory guide prognosis and treatment decisions.

Understanding it

What it is, and what happens next.

In plain English - what is going on, how specialists confirm it, and the routes to treatment in the UK.

In ADPKD, faulty polycystin proteins let tubule cells proliferate and secrete fluid, seeding thousands of cysts that enlarge relentlessly and crowd out working tissue. Kidney function typically holds steady for decades - the kidneys compensating even as they triple in size - then declines, with around half of patients needing dialysis or transplantation by their 60s, though the range is wide.

Modern management is active rather than fatalistic: confirmatory imaging and, where needed, genetic testing establish the diagnosis; blood pressure is treated to tight targets; progression risk is estimated from kidney volume and eGFR slope; and those progressing rapidly are offered tolvaptan under nephrology supervision, alongside cascade screening and counselling for relatives. In many parts of the UK, routine NHS outpatient referrals for problems like this can take several months, whereas an initial appointment with a private consultant is typically available within around two weeks.

A quiet reminder

This guide is for information, not medical advice.

Your GP or specialist knows your history and can tell you which parts apply to you. If in doubt, speak to them.

Published 2026-09-27 · Next review 2027-09-27

Frequently asked

Common questions about Autosomal dominant polycystic kidney disease.

Quick, plain-English answers to what people ask us most.

  • What is autosomal dominant polycystic kidney disease (ADPKD)?

    ADPKD is a common inherited condition causing numerous fluid-filled cysts to develop in the kidneys, gradually enlarging them and impairing kidney function, often eventually leading to kidney failure in a proportion of patients.

  • What causes ADPKD?

    It is caused by mutations in one of two genes, PKD1 or PKD2, which are involved in normal kidney tubule structure; a single altered gene copy from either parent is enough to cause the condition.

  • What are the symptoms of ADPKD?

    Symptoms include high blood pressure, back or flank pain, blood in the urine, recurrent urinary tract infections, and, as cysts grow, a noticeably enlarged abdomen; many people have no symptoms for years.

  • Is ADPKD dangerous?

    Yes, it can lead to progressive kidney failure requiring dialysis or transplant, and is also associated with other complications such as liver cysts and, less commonly, brain aneurysms.

  • Is ADPKD genetic?

    Yes, it is an autosomal dominant condition, meaning each child of an affected parent has a 50% chance of inheriting the condition, and genetic testing and counselling are often relevant for family planning.

  • Can ADPKD be cured?

    There is no cure, but treatments including blood pressure control and a specific medication (tolvaptan) can slow disease progression in eligible patients, and kidney failure can be managed with dialysis or transplant when needed.

  • How is ADPKD treated?

    Treatment includes strict blood pressure control, tolvaptan for eligible patients with rapidly progressing disease, managing complications like infections or pain, and planning for dialysis or transplant if kidney function significantly declines.

  • How is ADPKD monitored over time?

    Monitoring includes regular blood pressure checks, kidney function blood tests, periodic imaging to track kidney and cyst size, and screening for associated complications such as brain aneurysms in higher-risk family history situations.

  • ADPKD vs simple kidney cysts — what's the difference?

    Simple kidney cysts are common, usually solitary or few in number, and rarely affect kidney function, while ADPKD involves numerous cysts throughout both kidneys, progressively impairing function and often running in families.

  • When should I see a doctor about possible ADPKD, and how quickly can I be seen privately?

    See a doctor if you have a family history of ADPKD or relevant symptoms. NHS nephrology referral can take 20 to 45 or more weeks, while private specialist assessment is often available within about two weeks.