ARPKD is a severe and rare form of PKD that affects roughly one in every 20,000 children worldwide.
What causes ARPKD?
For a child to inherit ARPKD, both parents need to be ‘carriers’, which means that they each have one copy of the mutated gene that causes the disease. If this is the case then there is a one in four (25%) chance that the child will inherit two copies of the mutated gene and therefore develop ARPKD.
ARPKD can cause fluid-filled cysts to grow on the kidneys and liver during foetal development, which can affect the growth of other organs such as the lungs. Sadly, around one in three (33%) babies with ARPKD do not survive past a few weeks because of breathing difficulties. However, of those who do survive past the early stages, nine out of ten (90%) live to be at least five years of age.