To help raise awareness about polycystic kidney disease (PKD) on PKD Awareness Day, Can-SOLVE CKD patient partner Javiera Navarrete shared her story of being diagnosed with the condition and coming to appreciate the unexpected “blessings” that PKD has brought her.

A PKD diagnosis leads to a new purpose: Javiera’s story

When Javiera Navarrete moved from Chile to Edmonton in 2018 to pursue a Master of Science in Pharmacy at the University of Alberta, she never imagined her journey would intersect so deeply with kidney health.

A dedicated student with a passion for research, Javiera’s life took an unexpected turn in the fall of 2023 when she was diagnosed with polycystic kidney disease (PKD) just as she was about to begin her PhD program in Public Health.

Because her father lives with PKD—a chronic, genetic condition that causes the growth of fluid-filled cysts in the kidneys—the disease was familiar to Javiera, and the diagnosis was not a complete surprise.

“It was somehow expected, but of course, news that you didn’t want to hear,” she recalls. “All of a sudden, I saw myself as someone living with a chronic condition.”

Turning a family history into strength

Unlike her father, who received his diagnosis in his 50s, when kidney failure had already begun, Javiera’s PKD was detected early.

“I was feeling low energy, fatigued, and not like myself,” she says. Knowing her family history of PKD, Javiera’s doctor ordered an ultrasound. It revealed clusters of cysts on her kidneys, confirming what she and her sister had long monitored through regular testing.

The news was overwhelming at first, but after time and reflection, Javiera came to see it through a different lens, as something that connects her to her family and motivates her to be proactive about her health.

“Maybe it was a blessing to know early that I live with this. It’s part of me and part of my family history—for good or bad,” she says.

Since then, Javiera has embraced daily habits to preserve her kidney function for as long as possible. She drinks a minimum of three litres of water a day, exercises regularly, limits her salt and protein intake, and prioritizes her mental health.

“It’s basically daily habits that I incorporated into my life to take care of my kidneys at this stage,” she explains. “The disease will make progress. I cannot stop that. But I can preserve the [kidney] function as much as I can.”

Finding purpose in patient-oriented research

Javiera’s diagnosis also led to a newfound sense of purpose. In 2024, while attending a conference on patient-oriented research, she came across a poster presentation that immediately resonated with her. “It wasn’t about the research—it was about the vision and the principles behind it,” she remembers. “I thought, ‘Oh my God, this speaks to me on another level.’”

That poster belonged to the Can-SOLVE CKD Network. Soon after, Javiera connected at the conference with Indigenous Initiatives Manager Jocelyn Jones, who told her about Can-SOLVE CKD and the Patient Governance Council (PGC) and encouraged her to consider joining the network as a patient partner.

At her first PGC meeting that fall, Javiera noticed she was one of the youngest people in attendance. But instead of feeling out of place, she felt energized by the possibility of bringing a different perspective to the council, while learning from the experiences of others too.

“Everyone was so passionate about what they were sharing,” she says. “I just felt it was such a good group of people doing great things together … and I really wanted to be part of that.”

Discovering a “brave space”

As a PGC member, Javiera now participates in council meetings and project check-ins, adding her perspective both as a person living with PKD who was diagnosed early and as a caregiver for her father, who was diagnosed later in life. She credits the experience with helping her find her voice.

“The work with the PGC has helped me to be more confident and empowered about my own story,” she says. “It’s taught me that it is important to be present, and that’s what I try to do. I feel it’s a brave space where you can be yourself. It’s not just a safe space—it’s a brave space, and I truly appreciate having that.”

Her involvement has also shaped her academic path. “I had the theory [of patient-oriented research], but with Can-SOLVE I learned in practice what it looks like,” she explains. “If we don’t include the voices of those affected or impacted by the topic of the research or the outcomes of the research, we are missing a huge part of our community that actually might care about all of this.”

Javiera and her beloved dog Luna, a Bichon-Shih Tzu mix from Carstairs, Alberta, on a walk in the fall of 2023, after Javiera was diagnosed with PKD.

Focusing on community, connection, and hope

Beyond the Can-SOLVE CKD Network, Javiera is an active volunteer for both the Edmonton chapter of the Kidney Foundation of Canada (KFOC) and the University of Alberta’s KFOC student group. For her, these communities bring joy, connection, and a sense of belonging she never expected to find through her diagnosis.

When asked what advice she would give others newly diagnosed with PKD, Javiera doesn’t hesitate. “Especially for someone with an early diagnosis, you can take care of yourself. There are ways to protect your kidneys, and those are very important,” she says.

“It might seem overwhelming, knowing how the disease will progress in time, but health sciences and medicine in general advance every year … There are options and hope, and you can live a fulfilling life, taking care of yourself and just acknowledging that you live with this.”

Reflecting on her journey from shock to acceptance, Javiera describes her diagnosis as a turning point that gave her more than she expected. “I was able to find that piece in me that wasn’t there—like it was missing,” she says. “With the diagnosis itself, it was like, ‘Okay, I feel complete.’”

To learn more about PKD, visit the PKD Foundation of Canada’s website and check out their article “33 Things to Know About PKD”.

Main photo: Javiera Navarrete, Can-SOLVE CKD patient partner and member of the Patient Governance Council, poses in Edmonton’s River Valley.