For people living with autosomal dominant polycystic kidney disease (ADPKD), BC Renal has a number of self-management resources, including two for pain:
These resources were developed with input from BC Renal patient partners, including Phaydy Phanouvong. Phaydy says, “Being able to share my experiences living with ADPKD so others can learn from it has been so rewarding.”
Phaydy adds, “I love the BC Renal ADPKD web page. There is so much information that can help people living with ADPKD. There are so many types of pain. Understanding how to manage it is very helpful.”
BC Renal ADPKD Advisory Group chair and Fraser Health nephrologist, Dr. Mike Bevilacqua, provides a clinician’s perspective: “For patients, pain can be a major if not dominant problem, so we knew this was an important unmet need to address. Although there are no easy answers, by engaging patient partners and our partners with the PKD Foundation of Canada and the Kidney Foundation of Canada - BC & Yukon Branch, we were able to make some great patient-centred resources with practical tips to manage this often long-term issue. Seeing the final product, the patient voices really shine through resulting in a resource that speaks very directly to people living with this issue.”
Mike says he’s very proud of the members of the working group who developed these resources, adding, “It speaks to the strength of our collaboration with patient partners and these foundations that we were able to take an important area that is difficult and often ignored and tackle it head-on to come up with some practical and useful resources that help many of our patients.”
Since their introduction in 2020, the pain resources have collectively been accessed on the BC Renal website about 500 times.
Mike adds, “Many of my patients have found great value in these resources especially as previously there were not a lot of places for them to turn to try to address this major issue.”
Other self-management resources available are:
These resources are all available in English, Chinese and Punjabi.
ADPKD is a lifelong disease where people develop clusters of cysts -- noncancerous round sacs containing water-like fluid. As time goes on, more cysts develop and the cysts grow in size. The disease course experienced by people living with ADPKD is quite variable, from minimal impact on kidney function to rapidly progressive disease that results in kidney failure at a young age. AKPKD is the most common inherited renal disorder, and is the fourth leading cause of kidney failure in Canada.