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What is polycystic kidney disease?

Polycystic kidney disease, or PKD (or ADPKD, for autosomal dominant PKD), causes the kidneys to be slowly enlarged by many fluid-filled cysts. It is an inherited disease that can be passed on from your father or your mother, although they are sometimes unaware that they carry it.

This page provides short information about PKD - we also have a page with more detailed information about PKD

How is it diagnosed?

Often high blood pressure or an abnormal urine test leads to further tests. An ultrasound scan can show the cysts developing, although they may be too small to be seen until you are in your twenties or even later, even though you have the disease.

Can it cause kidney failure?

Kidney function is very slowly damaged by PKD, and in some people the kidneys are eventually completely destroyed. It is quite a common cause of needing dialysis or a kidney transplant. However in some people the disease is mild, and they may never develop serious kidney failure, or only in old age.

Can PKD cause any other trouble?

Sometimes. The most serious (but a rare problem) is haemorrhage from weaknesses in blood vessels beneath the brain, called a cerebral aneurysm.

People with PKD get more hernias, diverticulitis, and kidney stones than other people. Occasionally one of the heart valves is prone to leaking, although this is not usually an important problem.

The kidney cysts can get infected, and sometimes the size of the kidneys causes some discomfort.  Occasionally cysts may cause some blood in the urine which may look dramatic, but usually settles spontaneously.

Can I pass it on to my children?

Yes. One in two of your children (on average) will carry the disease. However the severity of the disease may be more or less troublesome than in the parent that they have inherited it from.

Should my family be tested?

Adults should be tested, at least in their 20s. It is always worth knowing about it, as it is important to make sure that blood pressure and other things are well controlled. Some people would rather not know, but as treatments are becoming available, most people will want to know.

How is it treated?

Blood pressure: Almost everyone with PCKD has high blood pressure. It is important to treat this, as it will be a lifelong problem, and can seriously affect the heart and blood vessels.

Avoid other risky things: ­ things that are risky to your health, such as smoking, and unhealthy eating habits; including adding salt to meals.

Chronic kidney disease: If kidney function is significantly damaged, there will be other things to look out for, as in all patients whose kidney function is damaged.

Slowing down cysts: Treatments are becoming available for those at high risk of kidney failure. More information

Further information

More information on polycystic kidney disease is available from EdRenINFO. The following may be particularly relevant:

 

  

Acknowledgements:  The author of this page was Neil Turner with the help of Dr Mike Watson. It was first published in August 2001. The date is was last modified is shown in the footer.

Licensed under a Creative Commons LicenseCreative Commons Attribution 4.0 International License.

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This page last modified 03.04.2016 17:59 by ANT. edren and edrep are produced by the Renal Unit at the Royal Infirmary of Edinburgh and the University of Edinburgh. CAUTIONS and Contact us.