Ever since I can remember, kidney disease has been a normal part of my family’s life. My dad and aunt both battled Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD), and each of them eventually needed kidney transplants. Because of them, I always knew there was a chance that I could inherit the same disease—but it still felt surreal when I found out that I had it.

Last year, at 21 years old, after experiencing unexpected pain and concerning lab results, my family and I reached out to Dr. Bleyer’s team, who works closely with families affected by ADTKD. Genetic testing confirmed that I carry the same gene that has impacted my family. Hearing those words broke me. I cried and grieved the future I thought I would have—one where my health wasn’t something I would need to constantly think about or manage. It took time to process everything, but I’ve learned that this diagnosis doesn’t define me; it’s just one part of my story.

When I was first diagnosed, my kidneys were functioning at about 60%, and they’ve continued to decline since then. Physically, I still feel well most days, but emotionally, it’s been a major adjustment. My mental outlook has changed a lot—I’m trying to embrace my health now, knowing it’s going to be a long road ahead. Instead of focusing on fear, I focus on living fully, making healthy choices, and being grateful for each day.

Faith has played a huge role in helping me cope. I truly believe that God wouldn’t put this in my path if He didn’t believe I could handle it. That belief gives me peace and purpose. I’ve also found comfort in connecting with Dr. Bleyer’s team and others who are working to better understand ADTKD. Their support reminds me that I am not alone in this and that progress is being made.

Even though ADTKD is rare and has no cure yet, I have hope. I believe research will continue to advance and that one day there will be more options for treatment—or even a cure. My biggest hope is that future generations, including my potential children and other families like mine, won’t have to go through the same experiences we’ve faced.

Sharing my story is my way of helping raise awareness and offering encouragement to others. This disease may shape my path, but it does not define my future. My goal is to keep living with faith, gratitude, and strength—and to show others that it’s possible to live well, even with ADTKD.