I just wanted to give you recently diagnosed PKDers some hope and assurance that this is not a Death Sentence! I have it, three of my four siblings have it, my Dad and his only sibling had it! In fact two of my three children were diagnosed with it at the 20 week pregnancy scan (now aged 13 and 11). So, I know what I'm talking about!! 😀😜
I am now 49 and ever since I had my PKD babies I have done tons of research. Now I'm not an expert, and the things I try are often trial and error. But I believe there are things you can do to help yourself and your kidneys. In fact if you're interested I started a blog:
I'm keeping record of my findings as I and my family attempt to live a PKD diet and lifestyle. As I said I'm not an expert, and who knows if it will ward off the dreaded kidney failure, but I'm hoping it will slow it down at least. Also I will be in a much stronger and healthier place for whatever the future has to hold.
Just remember though, 40% of PKDers don't ever need dialysis. Don't lose hope or despair, and if you want to be proactive do your research and try to be as physically strong and healthy as possible. Xx