No One Thought to Check
I have had hematuria most of my life. I was diagnosed with it in my 20s. I had so many Intravenous Pyelograms (IVPs) done that I became allergic to the dye. I also had many cystostomies and kidney biopsies with no definitive diagnosis. My father was diagnosed in his 50s with Alport syndrome and eventually had a transplant.
DNA testing led to Alport syndrome diagnosis
Our family was aware that Alport syndrome is a hereditary disease, but DNA testing was not available 20 years ago. I was not diagnosed until my nephrologist ordered DNA testing last year. If left to a primary physician, this would continue to be undiagnosed. I am now taking the necessary steps to manage my disease.
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