I’ve known about PKD for the entirety of my life. When I was a kid, I’d hear it mentioned in conservations between my parents, between my mom and her sister. I had a vague idea of what it meant to have PKD. Polycystic Kidney Disease is a disease where cysts form on a person’s kidneys, growing until they essentially stop the kidney from functioning. Because there is no real cure, and making healthy lifestyle changes can only help to a certain extent, people who have it almost always end up needing to have dialysis, and get a new kidney or two. PKD is genetic. One of the most common, essentially terminal, genetic diseases. And it runs on my mother’s side.

My mom, aunt, uncle and cousins have been diagnosed with PKD. My sisters and I all have a 50 percent chance of being diagnosed. I haven’t been tested yet. After my mom was diagnosed, she had a hell of a time trying to get life insurance policies. Logistics like that were made more difficult, and her and my father don’t want me to take that risk just yet, before I have a stable income, and can afford policies of my own. That used to piss me off when I was a kid. I always thought that it wasn’t fair, if I had this genetic disease, didn’t I have a right to know? But as I’ve gotten older, that desire to be tested has faded quickly. I know the risk, I know that I have a 1 in 2 chance of being diagnosed with a disease that will forever change my life. I know that having a diagnosis now may help me to understand certain needs my kidneys have, and will allow me to adjust my lifestyle accordingly. But truthfully, I’m scared.

When I was younger, PKD was just a term I heard but had never fully understood the gravity of. I knew what the disease was, I knew what happened — one year I did a presentation on it for the citywide science fair. I won silver. My judge had never heard of it, and thanked me for informing him. But knowing this information didn’t make the disease real in my eyes. I knew my loved ones had ticking time bombs stored in their bodies. I knew the bombs would go off eventually, but I figured it would be a long, long time from now. I had this naive belief that they’d all stay strong and healthy (or at least as healthy as they could be), and the foundation would find a cure in their lifetimes. I never thought the threat of losing people who played such an integral part of my life would be so real. I always thought of it as more of a possibility and less of it ever becoming a reality.

My aunt is in kidney failure. She’s still relatively young, with a husband, three daughters, and three gorgeous grandchildren, and an entire network of people who love her. She needs a kidney, desperately. She has a potential donor, and I pray daily that everything works out — that their kidneys are a match, that her body accepts it, that a transplant will help her to live a long and healthy life so she can see those three beautiful grandchildren grow up. It terrifies me, to see not only what my aunt goes through, but to see what her kids grow through, to know how sick their mom is. It makes me fear for my own mother. My mom is my best friend, honestly. I know people don’t say that, and parents should be parents and not friends, but I mean it wholeheartedly. She is the most caring, giving, loving, and occasionally crazy person in my life. And the thought of losing her to this disease terrifies me. I know she’s getting older. I know she’s had health issues. I know that she has cysts too, that her kidney function could be better. I always knew that PKD was life threatening, but it never hit me until the shit hit the fan, until our family saw the extent, the brutal truth of this disease.

I floated by when it came to spreading awareness. Sure, I’d volunteer at the annual walk, and I’d tell my friends, and share things on Facebook. But I didn’t try as hard as I could have. As hard as should, as hard as I need to. But I’ve made it my mission to spread awareness as much as possible, to everyone I know. It’s our only shot at a cure. I have seen my family live with this disease, and I know that it could be in my cards. But I don’t ever want my little cousins, my aunt’s three beautiful grandchildren, my nieces, my nephews, or my future children to ever have to live with this disease. PKD has taken its toll on families for generations, and enough is enough. PKD ends with me.