In our very first Patient Partner Spotlight, we reached out to the inspiring Arlene Desjarlais to hear her thoughts on what being part of the Can-SOLVE CKD Network means to her. Arlene has been an active member of the Can-SOLVE CKD Network via her involvement in a number of groups such as: the Indigenous Peoples’ Engagement and Research Council (IPERC), the KidneyPro Working Group, the Knowledge Translation Community of Practice, the Research Training and Mentorship Committee, and the Patient Governance Circle. She has also been involved in several of the Network’s research projects including Kidney Check, Deprescribing, and Triple I. Arlene continues to be a champion of the Can-SOLVE CKD Network as she shares her powerful story with the community and leverages her knowledge as a patient partner to further CKD research. Thank you to Arlene for taking the time to share her thoughts.
Being a part of the Can-SOLVE CKD Network has been life changing for me in so many ways. After the devastating loss my of beloved husband Glen, I was lost in the grief and disbelief that he was no longer here with me. I went through many emotions of how and why this happened to us. Glen worked hard at living with CKD and in the end, his life was cut far too short. After being invited into the wonderful Can-SOLVE CKD Network, I was able to come back to life. I found purpose in using my voice to champion CKD research and ultimately find a cure. I have always said that I did not want Glen’s life to be just another statistic. I want his life to be a legacy. I want him to be remembered for all the good Can-SOLVE CKD is working towards.
What I have learned since becoming a part of Can-SOLVE CKD is that our voices matter in this fight towards a cure. I learned that if Glen and I did the work early on in his diagnosis, he might still be here with us today. I learned only after Glen’s untimely death that there were so many studies we could have participated in had we known. Only now after joining Can-SOLVE CKD did I learn of the many peers that we could have reached out to for support during our journey.
For me, the accomplishment I am the most proud of is the Story Telling Module with Selina Allu. This was life changing for me. I was able to sit down and write our story from my perspective. I did not realize until I actually had to write it down, just how much I went through as the patient partner to Glen. I did not realize that although I was not the one living with the disease, I was living it each and every day with Glen. Participating in this module helped me to find not only my voice but my confidence. At the beginning of our journey with CKD I could have never imagined that I would be able to stand up in a room full of my peers, researchers and doctors, and tell our story. I know now in my heart of hearts that Glen’s journey (our journey) will never be viewed as merely a statistic, it will used as a learning tool to ensure the advancement of researched and eventual cure of CKD.