Our family’s chronic kidney disease dates back to the late 1800’s—at least six generations have been affected by it. Growing up, I watched both my grandmother and my mother go through dialysis and eventually receive kidney transplants. When I was diagnosed with Chronic Kidney Disease (CKD) at the age of 30, I knew this could not be just a coincidence.

Desperate for answers, in August 2007 I went to the Mayo Clinic in Rochester, Minnesota for a week of  comprehensive medical testing. After meeting with several specialists, including a geneticist, they could not determine the cause of my family’s CKD and I still had no answers.  But, while there, they uncovered that I had Stage 3 Follicular B-Cell Lymphoma.

I shifted my focus from my kidney disease to that of fighting my cancer. In 2008, after six rounds of chemotherapy, I was in remission! 

On December 14th, 2020, a day after my kidney transplant, a nephrologist walked into my hospital room and asked a life-changing question: “Do you know why you have kidney disease?”

That moment led to a referral to Dr. Anthony J. Bleyer, Sr. at Wake Forest School of Medicine (https://school.wakehealth.edu/faculty/b/anthony-j-bleyer), who finally gave us the missing piece of the puzzle through genetic testing: a diagnosis of Autosomal Dominant Tubulointerstitial Kidney Disease-Uromodulin (ADTKD-UMOD). For the first time, our family had a name for the disease that had silently affected us for generations. It was an incredible relief to know we were not alone—and that this wasn’t just our family’s mystery to bear.

Finding the Rare Kidney Disease Foundation was another turning point. Through them, I found a community of others living with this rare disease, and more importantly, I discovered hope—hope for a future clinical trial and the possibility of better outcomes for future generations.