Kidney Disease mystery solved! ADTKD UMOD genetic disease...

[Quallie]

I did a genetic test to discover why my kidneys failed at the age of 49. It turns out I have Autosomal dominant tubulointerstitial kidney disease (ADTKD). UMOD version. It, for now, is considered a rare disease, but many more people may have this genetic disease and not know it. If you don't know the cause of your kidney disease, and others in your family have had kidney disease/failure, get genetic testing at the Wake Forest Institute for free. Several people in my family tree died of kidney failure. Now I know why! It is a genetic disease carried down from generation to generation.

There is HOPE! Currently, there is a therapy in the works at the Broad Institute to stop the progression of ADTKD kidney disease - the more people who are known to have this disease, the more likely there will be funding to advance this therapy!

Please join us in helping to stop this disease!

Visit and join rarekidney.org for more information.

[Kidme]

Great post! Finding the cause of your kidney disease may open the door to hope you didn't realize was out there.

[Quallie in reply to Kidme]

Kidme - you are right! There is a therapy being worked on right now to stop the progression. (for those pre-transplant). Anyone who'd like more information on the process to get tested can go to rarekidney.org or contact Dr. Tony Bleyer at the Wakefield Institute directly. They do the actual testing. Rarekidney.org helps 'funnel' people to them (and provide info), and the more the merrier, so to speak -- the more people identified as having this gene mutation, the more likely to get funding ($$$ is needed) to finalize the therapy and get the therapy that is being developed to those who need it!