Stories

Lisa Werner, London ON

My name is Lisa Werner. My twin sister and I were born with polycystic kidney and liver disease (PKD1), a genetic disorder, but I wasn’t diagnosed until the age of 29. I received a kidney and liver transplant on November 16, 2020. The liver team removed my 35 pound liver,...

Jennifer Morgan, Halifax NS

"I remember how scared I felt on that drive and because of Covid-19 restrictions, my husband wasn’t allowed to come in with me. The next few days were a whirlwind – so many tests and doctors, followed by an eventual diagnosis of PKD."

Kristen Walsh, Lamaline NL

"Inspirational stories used to be just stories to me. We've all seen and heard them - you listen to a story about someone who has lost a limb, had a incurable diagnosis, lost their husband or wife, or had some form of tragedy and how they readjusted to their life."...

Clayton Rafuse, AB

My name is Clayton and I am a 23 year-old Paramedic living In Alberta. March of 2020 I lost my father, Pete Rafuse, to PKD. PKD is an illness my father lived with for the majority of his life without issue.  His doctor’s care plan was to monitor and see...

Marie-Pierre Schryburt, Ottawa ON

Marie-Pierre Schryburt- In 1998, my mother received the news that would change her life forever. Her baby boy had autosomal recessive polycystic kidney disease (ARPKD). This disease would affect his kidney function and cause him to require dialysis or a kidney transplant in the future. However the future wasn’t promised. In...

Willie & Nettie Van Dyk, Beamsville ON

Willie Van Dyk "When I was around the age of 35 (1996) I was diagnosed with polycystic kidney disease.   PKD is an inherited disorder where clusters of cysts to develop within your kidneys, causing your kidneys to enlarge and lose function over time."  Nettie Van Dyk  "When my husband, Willie,...

Luisa Miniaci-Di Leo, Dollard-des-Ormeaux QC

My name is Luisa Miniaci-Di Leo. Last October I turned 63, and each sunrise makes me feel bittersweet because I have already outlived my grandmother. I’m a resident of Dollard Des Ormeaux, and Montreal Chapter and Walk Coordinator for the PKD Foundation of Canada. Here’s why I took on the role as...

David Lafleche, Ottawa ON

My name is David Lafleche and I am very pleased to have this opportunity to share my story and journey with PKD.  It has been a long journey with a diagnosis going back to around my college days that resulted in some very early and profound life-changing decisions.

Michael Coyle, Burnaby BC

“YOU need to see a doctor!” said the nurse, pointing a finger and using her most serious voice. I was in an advanced first aid class with several Search and Rescue (SAR) volunteers. My partner and I were struggling to take blood pressure measurements “old school”: manually with the blood...

Willie Van Dyk, Beamsville ON

When I was around the age of 35 (1996) I was diagnosed with polycystic kidney disease (PKD). Being that I was diagnosed while I was still in the early stages, it did not really affect my day to day living. It was not until about 7-10 years later that I...

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