Fast Facts about Autosomal Dominant Polycystic Kidney Disease

•    It affects between 1 in 400 and 1 in 1000 people worldwide. 

•    At least one in every 1000 people has ADPKD

•    Because ADPKD has a ‘dominant’ inheritance pattern, there is a 50% 
chance that an affected parent will pass on ADPKD to each child born. 

•    Kidneys can enlarge 3-4 times their normal size. 

•    Nearly 2/3 adults and 1/3 children with ADPKD will develop high blood pressure or hypertension. 

•    Around 1 in 12 people with ADPKD will develop small brain aneurysms 
(these tend to occur in those with a family history of strokes). 

•    No specific dietary or other lifestyle measures have been shown to prevent cysts from developing in those with ADPKD, however a healthy lifestyle will help protect your kidney function, keep your blood pressure healthy and reduce your risk of heart attacks and strokes. 

•    Those with ADPKD should aim to keep their daily salt intake to no more than 5/6g (1 teaspoon) and preferably less. Often foods with “low salt” on the label mean that it has been replaced by Potassium, which can be equally as harmful. 

•    If you have ADPKD there is a 50% chance your baby will also inherit the ADPKD gene and develop ADPKD sometime during their life. 

•    Around 10% of people with ADPKD also have cysts in their pancreas. 

•    Approximately 50% of people with ADPKD develop kidney failure before 
the age of 60.

What are the symptoms of PKD?

Early in the progression of the disease there are generally no symptoms. In fact, many people are never diagnosed with ADPKD because they either have no symptoms or only a few symptoms that mimic other diseases. Common symptoms include:
High Blood Pressure also called hypertension, affects about 60% – 70% of men and 40% – 50% of women with ADPKD. It begins early in the course of ADPKD, often before there is abnormal kidney function. Left untreated, it further damages the kidneys, may enlarge the heart and can cause strokes.
Chronic pain or heaviness in the back, sides or abdomen is one of the most common problems for people with ADPKD. Pain can be intermittent and mild requiring only occasional pain medicine such as paracetamol. However, in a small number of people, the pain can be constant and quite severe.
Blood in the urine affects nearly 50% of those with ADPKD and can last for less than a day or a number of days. Bed rest, increased fluid intake and paracetamol for pain are usually the treatments if the bleeding is prolonged. 
Urinary Tract Infection (UTI) is caused by bacteria reaching the bladder, kidneys or the cysts themselves. The most common symptom of UTI is pain or burning with urination and/or an urgent need to urinate even though there is only a small amount of urine. When the infection is in the kidney or in a cyst, there may be a sudden onset of fever, chills and back or flank pain.
Kidney stones occur in about 20%-30% of people with ADPKD, compared to 8%-10% in the general population. The symptoms are severe pain in the back, side or into the groin. Often there will be blood in the urine when passing a kidney stone.e.

How is PKD diagnosed?

A doctor is alerted to the possibility of ADPKD in three different ways

Someone reports a family history of ADPKD

Signs and symptoms that commonly occur in ADPKD appear

A test is done for another reason such as UTIs or kidney stones and cysts are found in the kidneys

Diagnosis can involve a number of tests including:
  • Physical examination – may detect high blood pressure or enlarged kidneys
  • Ultrasound – the most common and least expensive test for PKD, sound waves detect cysts in the kidneys, even when they are quite small
  • Blood tests – may detect reduced kidney function
  • Urinalysis – blood and/or protein may be found in the urine
  • Computed Tomography (CT) and Magnetic Resonance Imaging (MRI) – may be required if ultrasound results are inconclusive or more information is required, as they can detect very small cysts
  • Genetic testing – for families with a history of PKD, however these are not routinely performed

Is there a cure for PKD?

Currently there is no cure for PKD, which is why the PKD Foundation is raising money to fund medical research into finding a cure and raising awareness of the disease in Australia.

Is there any treatment for PKD?

In the early stages, there are ways to maintain kidney health. The most important is ensuring high blood pressure is well-controlled using medication if necessary.  However, when kidney function is reduced to less than 10%, treatment with dialysis and/or a kidney transplant should be considered. As each person’s experience is different, you should ask your doctor for more information.