I met Heather at the Hope on the Hill Conference, and so many other great people. I was diagnosed a year and a half ago (no documented family history) because of high blood pressure and protein in my urine.
What inspired me to action after a year and half was lobbying Congressional leaders this past week. Alhtough PKD is the most prevalent genetic disease in the world, almost no one has heard of it. As PKD patients, I feel it's our most important job to "put a face" on this disease and spread the word far and wide. The doctors at the conference seemed excited about the ongoing research, and feel that a cure may be here in our lifetime, what we need to do is help any way we can to get the funding to make a cure happen.
I was just going to donate some money to a PKD Walk this fall, but now I'm leading a team in the Philly walk, so that maybe there will be a sure before I need a new kidney.
I'm back at my nephrologist next month, and am hoping for no change from last year (maybe some better cholesterol numbers). I'll let you know :)