My name is Kate Chong, born and raised in southern Alberta but have called Metro Vancouver home since 2007. I have worked for the Pacific National Exhibition (PNE) in a few roles since my arrival in 2007 – currently I am their Manager of Community Relations. This role allows me to work with the community locally and province wide through numerous initiatives.
My involvement in the community doesn’t stop with my job but also into my personal life through volunteer work. Since I was diagnosed in 2011, I have been involved with the Kidney Foundation of BC through events, speaking engagements and walks. Since 2014 I have been engaged with numerous research committees and workshop. I also assist BC Transplant at events, and I have participated in the Kidney March in Alberta (2012, 2013, 2014, 2015) walking 100 km over three days. My mom and I have raised $27,340 dollars as a team to help kidney research and programs.
As you read the above, you can see my passion for being involved in the Kidney community. Why? I am a Kidney patient with chronic kidney disease (CKD). I was diagnosed in 2011 at the age of 25 with IgA Nephropathy and was functioning at 13%. I have been able to avoid dialysis and have been able to build back my function to around 30%. I have been fortunate compared to so many, not often can you improve your function.
Most days I feel like a “normal” person but there are days that I am reminded I live with this disease. Your basic cold or flu is not normal at all, the recovery is a lot longer. I am starting to see other side effects popping up. I know there is a possibility I will decline, but I want to be able to find ways that this can be prolonged and subsequently have a higher quality of life. The impact to my significant other is minimal, except when I am sick, as we move forward and look at having a family, my health is a huge component.
Finding ways to diagnosis patients earlier and to delay progression are important to me. These are a few reasons why I got involved in the Can-SOLVE CKD initiative. Research is how we are going to move forward, find solutions and make a change. Can-SOLVE CKD is an extensive grant outlining so many important projects and initiatives. The involvement of patients has been placed front and centre, engaging us in discussions, workshops and reviewing each step along the way.
My personal experience will help those who work in the field of research to understand the importance of this research and what areas are important to patients, which in the end will provide better quality of life to those living with chronic kidney disease. The experience of being able to help in research is quite rewarding, as you are working towards a future with earlier diagnosis, slowing progression of the disease and providing stronger support when the time comes for transitioning towards dialysis or transplantation. Patient involvement is imperative to the success of research, having their involvement will allow researchers to know what is important.
I look forward to my continued involvement with the Can-SOLVE CKD grant including the Steering Committee and Patient Council—this will be a huge growth in linking patients with researchers, clinicians and policy makers. Support towards this grant, I feel, will make a difference to patients living with Kidney disease.