kkmommy Me, me, me!!!! I was diagnosed with this Jan 2015 by a kidney biopsy. It was handled by Keck USC Hospital, Dr. Michael Koss, then verified by Cedars Sinai Hospital renal pathology. It is indeed a rare bird. Less than 50 in the world ever diagnosed. You have been told correctly, there is no cure, no treatment, no research because there are so few people with it.

I am under the care of a nephrologist. Every three months there are lab tests run. I follow a strict renal diet. My eGFR has been declining, and tomorrow I find out what yesterday's tests show now. My protein intake is limited, and I take blood pressure meds [2 calcium channel blockers named Verapamil and amlodipine besylate] plus furosemide to help my system release excess fluid.

By the way, welcome to May Clinic Connect. You have found a great forum of caring people, who will share their experiences and stories of their health journeys.

What is your eGFR, and what led your drs to do a biopsy?
Ginger