Ever since I can remember, kidney disease has been a normal topic in our family. My grandfather got his kidney transplant around the time I was born & my mother got hers over five years ago. It was always in the back of my mind that I could have it.
When visiting Drs, I was always asked, “What’s the name of your disease?” I would reply with, “there isn’t one. It’s being researched.” We began correspondence and met with Dr. Anthony Bleyer. We learned from him that our kidney failure was genetic.
Based on our family history and the increasing creatinine and a bland urinalysis with normal kidney scans my niece was referred to Dr. Bleyer and was tested for a newly discovered genetic disorder that affects kidneys called ADTKD.