Hello! I am Brenda Conway, a co-coordinator of the Halifax Chapter of the PKDFOC. I was diagnosed with PKD in 2003 at the age of 33. I worked full time as a cardiovascular surgery RN. I am now 50 and have been on disability since 2015. My diagnosis was a shock as I didn’t know of anybody who had this disease, including any family members. My health has since been complicated with the diagnosis of Crohn’s and depression. When I was first diagnosed with PKD, there wasn’t much, if any, support or information on PKD. I felt alone with a newly diagnosed life-threatening condition. That all changed when I found the PKD Foundation of Canada.
I attended the first PKD patient forum in Halifax in 2017. I knew then that I had to help inform people of this foundation. Becoming a co-coordinator of the Halifax Chapter will allow me to accomplish this. The Halifax Chapter gives me the opportunity to help those affected by PKD. By providing education, advocacy, support and awareness we hope to help patients and their loved ones cope better with their diagnosis and progression of the disease. The Halifax Chapter will also promote programs of research to discover treatments and a cure of polycystic kidney disease.
My name is Brenda MacKenzie, I am 59 years old and I am currently at end stage kidney failure. I have been a real estate agent in Halifax Nova Scotia for 31 years.
I am one of the Coordinators of the new Halifax Chapter the PKD Foundation of Canada.
My family has been living with PKD since 1970. I was 10 years old when my mother suffered a brain aneurysm which was ultimately linked to her diagnosis of PKD. I can still remember how scary it was. At that time dialysis was much different than it is today.
My Mom received a kidney from her sister in 1972 and I am thrilled to report they are both still going strong! In July of 2018, my brother received his gift of life after spending 6 years on dialysis.
My personal journey began in 2006 while applying for critical illness insurance when I received my diagnosis. I am currently on the transplant list and I have been fortunate to have friends and family members who have stepped up to be tested as potential donors. At 7%, I know that dialysis is close at hand.
The PKD Foundation of Canada’s dedication and role of fighting PKD through research, education, advocacy, support is very important to me and to those of us who suffer the physical and emotional impact of living with a critical illness. My hope is that the Halifax Chapter can provide a forum where people can feel safe to discuss the disease, ask questions, share news, feel supported along their journey and spread awareness.
Please reach out and feel free to share your story.
I am Anita MacDonnell, I live in Halifax, NS however am originally from Mabou, Cape Breton. I have worked in the tourism and travel industry for over 30 years and am employed as General Manager for Atlantic Tours & Travel; and I have PKD.
My mom had PKD and died in 1973 – she had 8 children and 4 of us have the disease. My three siblings have received kidney transplants and 2 of them have also received liver transplants. Two of my brothers generously donated kidneys and the third sibling received a cadaveric kidney. We are a family that is familiar with transplantation and the amazing gift of life that it is. I am age 60 and the youngest of the 8 siblings and started dialysis in October, 2020. I am on the transplant list and am hopeful for a perfect match.
The PKD Foundation gives me hope for advances in research and to bring people together to share stories and support each other.
The PKD Foundation of Canada Chapters are led by volunteers who want to make a difference in the fight to end PKD. We are currently recruiting key volunteers to help with our efforts this year! If you live in the area and are interested in joining our national network of volunteers, visit endpkd.ca/get_involved to sign up!
Watch the University Health Network's 2019 PKD Conference Recordings Today!Read more