I was diagnosed with PKD in October 2015. I am the fifth generation affected by PKD in my family. My great-great-grandmother, great-grandmother, grandfather, great-uncle and my mom all have or had PKD. I am the youngest member of my family to be diagnosed with PKD.
My diagnosis came when I went for my cheerleading physical last summer. My blood pressure reading was 157/100 mm Hg, which made my mom concerned, and so she made an appointment with my pediatrician. My pediatrician, Dr. Mary, sent me for a renal ultrasound, and two days later, I was diagnosed with PKD.
I am currently struggling to get my blood pressure under control, so I am seeing a pediatric nephrologist at UPMC Children’s Hospital of Pittsburgh. Since my diagnosis, I have faced some challenges with PKD. Changing my diet, for one, has been a huge change. I struggle with it because I cannot eat some of the foods I love, like pop (Pittsburghers’ name for soda), Flamin’ Hot Cheetohs and Starbucks. I miss these foods. My other challenge is trying to get my friends and teachers to understand the complexity of PKD. I may look fine on the outside but on the inside there are days of complete fatigue. There are days I need to take a break from sports and people just don’t understand.
I want to raise awareness about PKD. I want people to understand what our bodies go through with this monster of an illness. There are a lot of misconceptions. I want to be an active advocate for children and teens like me with PKD.
Paige is 13 years old and lives in Pittsburgh, PA. She will be starting eighth grade in August. She is active in sports at her school, and is a member of the cheerleading squad. In past years, she has also been a member of the wrestling, volleyball and softball teams at her school.