Building community following a rare kidney disease diagnosis: Ruchi's story

_“I had just started my master’s program in 2001 when a routine physical led me to be diagnosed with IgA nephropathy, a rare auto-immune disease of the kidneys. Honestly, I didn’t really worry about it at first. I didn’t know enough to be worried. I was put on a blood pressure medication, but I didn’t feel sick. I felt young and healthy and perfectly fine. It wasn’t until I got pregnant years later that I realized how serious this condition could be.

Over the course of two pregnancies, my kidney function rapidly started to decline. I progressed from stage one to stage three disease, and suddenly there was a lot more talk about treatment and outcomes and eventual transplant. It hit me then that I didn’t know anyone else with this condition. I had two young children and I didn’t know what my future looked like.

And so, in 2023, when I found out about an IgAN patient symposium in the States, I decided to go. As soon as I walked into that room and found myself surrounded by 200 patients and caregivers who implicitly understood my struggle, I knew this community was exactly what I’d needed all along.

The experience motivated me to help build a similar community in Canada. I started a Canadian IgA nephropathy Facebook group and trained as a Canadian ambassador for the IgA Nephropathy Foundation. I’ve been advocating for better access to treatment here in Canada. I’ve met so many people through this work and made so many close friends. I never expected to form such deep new friendships as an adult.

“I know now that there will be people willing to support me and help me no matter what happens next.”

Community is a huge part of my mental health now, but it’s also part of my physical health. We’re able to share information about treatments and help each other find better care. And, last year, when my disease progressed to stage four, I put out the word on social media that I was in search of a living donor, and five people quickly stepped up. It was overwhelming to receive such support and love. In the end, my condition stabilized and the need for a transplant was delayed, hopefully indefinitely. But I know now that there will be people willing to support me and help me no matter what happens next, and that means everything.”