My name is Vanessa, and I’m 32 years old. I come from a long line of PKD survivors. My maternal grandfather was on dialysis for several years before passing away in the ’70s. At the time, they didn’t know it was PKD or anything hereditary. My mother and uncle went decades without knowing they carried this gene. It wasn’t until my uncle went into renal failure that he told my mom to get tested. She was shocked to find out that she also had the disease. They both had to get kidney transplants. At 18, she had my brother and I diagnosed. We too had PKD.

I was always an extremely active person, a professional dancer at one point, and I took my health seriously. However, I tend to suffer from sporadic kidney pain, hypertension, and I’ve suffered from two kidney infections in the past five years, one of which was this past Christmas Day, which sent me to the ER for several days.

As I recover now, taking my antibiotics and trying to control the pain, I think about the small changes I can make in my daily routine to potentially mitigate the risk of another infection. Perhaps I need even more water or maybe my diet needs some tweaking. We may go through life continuously thinking about things we might be able to do in order to have some control over this illness that we didn’t ask to receive.

I hope that sometime in the near future we have more medications that can ease this burden so that we can all live normal lives. Until then, let’s remain vigilant, determined, and strong together!