I was diagnosed with polycystic kidney disease more than 20 years ago, when I was living overseas in Dubai. My blood pressure was unstable and there were traces of blood in my urine, so tests were done to find an underlying cause. An ultrasound revealed numerous cysts on my kidneys, to my great surprise.  

Finding out I had PKD came as a shock. The disease is usually hereditary, passed along in families. I am not aware of anyone else in my family, past or present, with the condition. 

For many years, I didn’t have any symptoms but about three years ago that changed. I started feeling more discomfort and abdominal pain, and my kidney function dropped. I began searching online for information and connected with The Kidney Foundation of Canada. I learned about the peer support group sessions for people with kidney disease and signed up.

I like the peer support meetings because they provide a sense of community. I used to feel alone with my illness, but I have come to realize there are a lot of people like me who are experiencing similar issues. You can learn a lot about how to manage the disease by listening to other people’s stories in a safe and understanding environment.

I am now a facilitator with the PKD Peer Support Group.  The meetings take place online so people can log in from anywhere in Ontario and even outside the province.   

I think with a condition like PKD you can sometimes feel like you are losing control of your health, and there is not much you can do. In the peer support meetings, we share tips and strategies to make living with PKD a little better. We don’t provide medical advice, but we talk about how we deal with our symptoms and what is going on with us.  In that way, you can begin regaining some control.