Online tool helping people living with chronic kidney disease

Health professionals tend to focus on things that patients can't do or have when they're diagnosed with a life changing disease. But University of Calgary Cumming School of Medicine chronic disease researcher Dr. Maoliosa Donald is changing that narrative through a new website for kidney patients.

"We're told you cannot eat this, this and this," said Donald. "But provide us with resources that we can choose what we can eat and then have that discussion with our clinician, be it their physician, dietitian, social worker."

Donald spent the last four years talking to chronic kidney disease patients about questions they had when they first found out they had the disease.

"(I asked) mostly patients that are newly diagnosed with chronic kidney disease or in those early stages, not (those) deciding if they need information around transplant or dialysis options," she said.

ABSORBING INFORMATION AT BENEFICIAL PACE

Dr. Donald said it's important for patients to absorb information about their disease at a pace that is beneficial.

"Patients or caregivers can go there on their own terms when they need the information versus how we traditionally would give information handed out when they were at a clinic appointment," said Donald. "Or when we thought that they needed this information and the gap was patients and caregivers said we need something that is timely when we're ready for this information."

Cheryl Duff was diagnosed over 20 years ago.

"Doctors said you have polycystic kidney disease but don't worry about it, it'll never affect you in your life," said Cheryl.

But  in 2016 her kidneys stopped working, and after a time on dialysis her husband Stuart donated a kidney to her. The Duffs are Kidney March participants and are happy to see the funds they help raise go to projects that help patients.

"You can go on this website and learn," said Cheryl. "I didn't have that option, there was nothing out there so it's a fantastic website that they hop on there, see if you can get your questions answered, if not, there's connections there."

Stuart says there is information on the site for caregivers that is helpful.

"This at least puts it in a better perspective that, as Cheryl said, it's more calming and brings you down a bit," said Stuart. "Instead of all the anxiety because there's a lot of anxiety with what's going on, I mean no kidneys you don't live right? I mean your choices are dialysis or death."

The 2021 Kidney March was held virtually for the second year in a row. Executive director at the Kidney Foundation of Canada Southern Alberta Branch, Joyce Van Deurzen said the event raised upwards of $900,000.

"All the research that we fund the programs and services we offer, all of our services are free of charge," said Van Deurzen. "That's only possible because of the generous donations and the incredible fundraising that our volunteers and our kidney marchers do."

The website is proving to be a valuable tool for people all over the world.

"We know it's been used obviously in Canada as we disseminate it out there but also in the US and Europe and South Asia," said Donald.

Learn more about the site here: www.mykidneysmyhealth.com