My mother had known about PKD for years and maybe through her entire adult life she had known about PKD, but she chose not to tell us. So, the entire time growing up, we didn’t know this was part of our family history until it came up with her nearing kidney failure and having to go on dialysis herself. She had intentionally not told myself and my sisters about PKD earlier.

I asked my mother about this recently and she said it wasn’t something that we talked about.  It was known in the family that her mother had this and probably previous family members, but they intentionally didn’t want to talk about this disease and make a big deal about it to people. 

My mother told me that you just didn’t really talk about something like PKD or a disease like that in your family. Because of what it may lead to as far as people knowing about it possibly at work or just in the community is kind of my understanding of it.

I didn’t tell a lot of people about PKD myself.  I didn’t tell people about having this beyond close friends and family about this and what I was going through and just explaining what PKD was.  Now I tell my children about it and my wife, and we’re open with our kids about it, compared to it being different maybe in a previous generation, but still I could see, I can understand the mindset previously of oh, that’s not really something we wanted to talk about openly.

My family overall is open talking about PKD. Several family members have it.  Other family members don’t, but we know about it, and we kind of talk about how everyone’s doing and what’s going on with each person’s status with PKD. GFR is a big thing, “What’s your GFR? What has your nephrologist said? How are visits going with your nephrologist?”

We don't talk about PKD every day, but we are aware of it and sort of how’s everyone doing. Some family members have had transplants besides myself.  Other family members haven’t, and they're thinking about it maybe in the future of having to address it either through transplant or dialysis. With my immediate family, we don’t talk about PKD all the time, but we talk about it. 

A way that we keep PKD on our minds is through the PKD Foundation.  I volunteer for the PKD Foundation. Here in Western New York I volunteer to run the Walk for PKD every fall.  So, that’s a great way that we think about PKD and make sure that we’re helping to kind of contribute to research and any news that’s happening with PKD.