We want to be part of the solution, not just be the problem: Why patients need to be involved in scientific conferences?

At the end of 2010, I suddenly became ill following a sore throat that lasted for 3 days. I felt very unwell, and I learned that my kidney function was compromised. In the weeks following, after a kidney biopsy, I was diagnosed with acute post-streptococcal glomerulonephritis and also IgA nephritis. In March 2014, I started peritoneal dialysis, and on the 18th of November 2014, I received a kidney transplant from my brother. The journey with kidney disease has been an emotional and physical roller coaster ride, especially when my teenage children have needed to be my caregivers – very confronting.

This year, I was invited to speak at a plenary session at the Australian and New Zealand Society of Nephrology Annual Scientific Meeting in Sydney, Australia, to give my perspective of living with chronic kidney disease and what we can contribute as patients living with chronic kidney disease. This opportunity meant a lot as it gave me an opportunity to present our strengths as patients and what we can contribute in knowledge, stories and experience for researchers and clinicians. Standing at the podium, I was very nervous and feeling quite intimidated by the amount of knowledge in the room, but my strength is in my experience, knowing my story and those of others who are on the journey with kidney disease too.