Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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any adults with arpkd doing okay?

My 3 month old son was born with autosomal recessive polycystic kidney disease. He is doing okay at the moment. I try to find stuff online but it is all so grim. Are there any adults with autosomal recessive polycystic kidney disease who are doing okay? I need a little ray of hope on days I succumb to sadness. 

Replies

Chewitt
Chewitt

I can't think of anyone we've had in the group who has ARPKD. Have you tried the Facebook group?

https://www.facebook.com/groups/20526281816/

I wish you well.
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