In honour of PKD Awareness Day on September 4, here are 33 things worth knowing about polycystic kidney disease (PKD), whether you live with PKD, love someone who does, or are learning about it for the first time.

1. PKD is a genetic disease.
Polycystic kidney disease is caused by changes in genes. The most common form, autosomal dominant polycystic kidney disease (ADPKD), often runs in families.

2. With ADPKD, each child has their own 50% chance of inheriting it.
If a parent has an ADPKD-causing genetic variant, each biological child has a 50% chance of inheriting it. That doesn't mean exactly half the children in every family will have PKD. Each child has their own separate chance.

3. PKD can sometimes seem to “skip a generation.”
ADPKD doesn't normally skip generations genetically, but a family tree can make it look that way. One person may have mild or late-onset disease, or never know they have PKD, while another relative may develop problems much earlier.

4. Not everyone with ADPKD has a known family history.
Sometimes PKD wasn't recognized in earlier generations. In other cases, a person can have a new genetic change and be the first known person in their family with ADPKD.

5. There is more than one type of PKD.
ADPKD is the most common form. Autosomal recessive polycystic kidney disease (ARPKD) is much rarer and is usually diagnosed in babies or children, although the age and severity can vary.

6. PKD isn't simply “having cysts on your kidneys.”
Cysts can grow and multiply over time, changing the size and structure of the kidneys. PKD can also affect blood pressure and other parts of the body.

7. Good kidney function doesn't always mean PKD isn't affecting someone.
Kidneys can become significantly enlarged while still filtering blood relatively well. Some people may also experience pain, infections, kidney stones, blood in the urine or other complications before their kidney function becomes severely reduced.

8. PKD doesn't progress at the same rate in everyone.
Some people maintain good kidney function into later life. Others experience faster progression. Even people in the same family can have very different experiences.

9. We can learn more about someone's risk of progression.
Doctors don't have to rely only on today's kidney function. Kidney imaging, age, changes in kidney function over time, family history and, in some situations, genetic information can help build a clearer picture of how ADPKD may progress.

10. Earlier care matters.
PKD care isn't only something to think about when kidney function becomes low. Monitoring blood pressure, assessing risk, managing complications and discussing treatment can begin much earlier.

11. High blood pressure can be an early sign of ADPKD.
High blood pressure is common in ADPKD and can develop while kidney function is still good. Monitoring and treating it is an important part of protecting kidney and heart health.

12. Home blood pressure readings can be useful.
Your healthcare team may recommend checking your blood pressure at home. Ask what your personal blood pressure target should be and how to take an accurate reading.

13. There is a treatment that can slow ADPKD progression for some people.
Tolvaptan can slow the decline in kidney function in some people with ADPKD who are at risk of rapid progression. It isn't right for everyone, and treatment decisions should consider a person's individual risks, potential benefits, side effects and preferences.

14. PKD can be treated, but it can't yet be cured.
There are treatments to manage PKD and its complications, and tolvaptan can slow ADPKD progression for some people. But no treatment currently stops or reverses PKD, and treatment options remain limited, especially for some people and for those living with ARPKD. That's why continued research matters: we need better treatments for more people, and ultimately, a cure.

15. PKD can cause pain, and that pain deserves to be taken seriously.
Pain can come from enlarged kidneys or liver, cysts, kidney stones, infection or other causes. For some people it is occasional. For others, chronic pain can have a major effect on everyday life.

16. Kidney stones and cyst infections need appropriate care.
People with ADPKD have an increased risk of kidney stones and cyst infections. A suspected cyst infection may need different or longer treatment than a typical urinary tract infection, so involving a healthcare provider familiar with PKD can be important.

17. PKD can affect the liver too.
Liver cysts are common in ADPKD. Many cause few or no problems, but some people develop significant liver enlargement or symptoms that need specialized care.

18. ADPKD is associated with an increased risk of brain aneurysms.
That doesn't mean everyone with ADPKD will develop one or that everyone needs routine screening. Personal and family history matter, and screening decisions should be discussed with your healthcare team.

19. A sudden, extremely severe headache is an emergency.
A ruptured brain aneurysm can cause a sudden, severe headache, sometimes described as the worst headache of a person's life. Seek emergency medical care if this happens.

20. Genetic testing can be useful, but it isn't necessary for everyone.
Genetic testing can help when a diagnosis is uncertain, there is no known family history, family members have very different disease patterns, or living kidney donation is being considered. Genetic counselling can help people understand what testing may, and may not, tell them.

21. Finding out whether you have PKD is a personal decision.
For someone with a family history who has no symptoms, screening can provide useful health information, but it can also have personal, emotional and financial implications. Counselling before testing can help people make an informed choice.

22. PKD can affect decisions about having children.
People with ADPKD may want information about inheritance, pregnancy and reproductive options. There isn't one right choice. Genetic counselling and preconception care can help people understand their options and make decisions that fit their own lives and values.

23. Many people with ADPKD can have successful pregnancies.
Pregnancy isn't automatically unsafe because someone has ADPKD. Individual risk depends on factors such as kidney function, blood pressure and other health concerns. Pregnancy care may involve both kidney and high-risk pregnancy specialists.

24. Food advice for PKD shouldn't be one-size-fits-all.
There is no single “PKD diet” that is right for everyone. Nutrition needs can change with kidney function, blood pressure, medications, kidney stones and other health conditions. A renal dietitian can help make advice personal and practical.

25. More water isn't automatically better for everyone.
Fluid needs can vary. Some people with ADPKD may be encouraged to maintain good hydration, while others may need different advice because of their kidney function, medications or other health conditions. Follow advice that is appropriate for you.

26. Movement is generally good for people with PKD.
Regular physical activity supports overall and cardiovascular health. The best type and intensity depend on the individual. People with very enlarged kidneys, significant pain or other complications may want to discuss certain activities or contact sports with their healthcare team.

27. Mental health is part of PKD care.
Uncertainty about disease progression, pain, family risk, finances, work, dialysis or transplantation can affect emotional well-being. Anxiety and stress aren't side notes to PKD care. They deserve attention and support too.

28. PKD can affect ordinary life in ways other people don't see.
Appointments, medications, scans, fatigue, pain, insurance questions, work decisions and planning around symptoms can all take time and energy. At other stages, PKD may take up very little space in someone's daily life. Both experiences are real.

29. Kidney failure is one possible part of PKD, not everyone's present reality.
Some people with PKD eventually need dialysis or a kidney transplant. Others maintain kidney function for much longer. A diagnosis doesn't tell you exactly when, or whether, kidney failure will happen to a particular person.

30. There are options if kidneys fail.
Kidney replacement therapy can include different forms of dialysis and kidney transplantation. Peritoneal dialysis can be an option for people with ADPKD too. Treatment planning should reflect the person's health, circumstances and preferences.

31. A kidney transplant treats kidney failure, but it doesn't erase someone's whole PKD history.
A successful transplant can be life-changing, but recipients still need ongoing medical care and anti-rejection medications. Other aspects of PKD, including liver cysts, may still need attention.

32. Good PKD care should be coordinated, with you as part of the team.
Depending on your needs, PKD care may involve a family doctor, nephrologist, nurse, pharmacist, genetic counsellor, dietitian, radiologist, hepatologist, urologist, pain specialist, transplant team or pregnancy specialist. Good care means these providers communicate when needed, while giving you clear information, taking your questions seriously and involving you in decisions about your health, goals and care.

33. What we know about PKD is changing.
The first international KDIGO guideline dedicated to ADPKD was published in 2025, bringing together current evidence on diagnosis, risk assessment, treatment, complications, lifestyle, mental health, pregnancy and children's care. Canadian kidney experts have since examined what those recommendations mean in the Canadian healthcare system.

Research continues. Care continues to improve. And people living with PKD are increasingly helping shape the research, programs and healthcare conversations that affect them.

Where this information comes from

2025 KDIGO ADPKD guideline and the 2026 Canadian Society of Nephrology commentary.

More

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