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Living with ARPKD

As your child grows, the initial abdominal enlargement will decrease.  It is unusual to have any signs or symptoms related to the kidneys unless the kidney function is severely reduced.  The kidneys are not painful but there is an increased possibility of developing urinary tract infection (UTI). The liver may develop scarring causing pressure on the blood vessels of the stomach and spleen.  This may result in enlargement of the spleen and rarely the tendency for bleeding into the stomach.

Children are usually seen frequently initially to stabilise blood pressure but will then have tests every 3-6 months depending on the severity of the kidney dysfunction.

The most important aspect to slowing the rate of kidney deterioration is excellent control of blood pressure.  Children have lower blood pressure ranges than adults with a goal blood pressure less than 110/75.

Help us find a cure for PKD

Did you know that you can also donate via bank transfer?

Please use the details below and email your bank receipt to to receive a tax receipt.

Bank: ANZ
BSB: 012 323
Account number: 290 372 354