Q&A All About ARPKD

What is ARPKD?

What causes ARPKD?

What is the kidney problem in ARPKD?

Are only the kidneys affected in ARPKD?

How is ARPKD diagnosed in affected fetuses?

If my child does not have ARPKD but is a carrier of the disease gene, what does that mean?

What is the transplant process like for a child with ARPKD?

How can family members become kidney donors for my child with ARPKD and how soon should testing begin?

Will my child be able to have children and if so, will their children also have ARPKD?

How many children with ARPKD die in the first month of life? If they survive the first month, what is their life expectancy?

If my child dies from ARPKD, should I have his/her cord blood preserved for genetic testing?

Will all of my children have ARPKD?

How can I know whether my next child will have ARPKD?

How will ARPKD affect my child’s experience in school, academically and socially?

Can my child play sports?

What kinds of medications might my child need to take on a daily and weekly basis?

How often will my child need to see a doctor?

What kinds of doctors might my child need to see?

How can I find doctors experienced in treating children with ARPKD?

How often do children with ARPKD need a transplant?

What age can I expect my child to either need dialysis or a kidney transplant?

What is dialysis and how does it work for a child with ARPKD