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Gwen Herrington has experienced first-hand what it’s like to live with chronic kidney disease — and now she’s using that experience to help others.

She’s a patient lead on the new website and research project, launching on World Kidney Day. The website aims to fill a critical accessible information gap in Canada, putting decision-making and information directly in the hands of people living with chronic kidney disease (CKD).

Herrington has undergone chronic kidney failure, complete failure, dialysis, and has now successfully received a transplant. She says her experiences with the health-care system were generally positive, and she had adequate information to make informed decisions.

“But not everyone has that experience, for sure. That's so sad and I want them to have that,” she says.

Herrington says she wanted to involve herself in research because transplant is not a cure for kidney disease, and it’s not the end of her journey with the illness.

“I have a vested interest in supporting our researchers and having them research things that are important to me, and to the CKD population,” she says. 

A user friendly, interactive website that supports patients and caregivers in managing aspects of their condition will be incredibly helpful for people living with CKD, says Herrington, and can help inform decisions.

The website not only lists information on food and diet, but can also tailor it to each individual’s needs. This includes information on how much potassium is in food — which is difficult to find on regular nutrition info, and critical for people with CKD to know — and information about medications, mental and physical well-being, and finances.

“There's a lot of decisions to make, a lot of learning to do, and you need good information in order to do it,” she says. 

Dr. Brenda Hemmelgarn, MD, PhD, is leading the My Kidneys My Health project. Over the past several years, Hemmelgarn’s team has worked with patients, caregivers, researchers, and health-care providers to develop the website. 

"Most importantly, the My Kidneys My Health website was co-designed based on preferences of patients with CKD and their caregivers. Our priority was to develop a tool that would inform and support them in the management of their CKD, based on their needs,” says Hemmelgarn, the dean of the Faculty of Medicine and Dentistry at the University of Alberta and a professor at the Cumming School of Medicine (CSM).

Being diagnosed with kidney disease can be a huge challenge, both for the patient and the people around them, says Dr. Maoliosa Donald, PhD, one of the project co-leads, and a health services researcher at the CSM.

Diagnosis and management, particularly in advanced stages of kidney disease, reduces a person’s ability to participate in everyday activities like work, travel and socializing while also causing numerous side effects such as fatigue, pain, depression, gastrointestinal problems and sleep problems. 

After receiving a CKD diagnosis, many people are told what they can’t do, but putting the information in patients’ and caregivers’ hands allows them to make informed decisions, allowing them to see what they still can do, she says.

“What I heard throughout the phases of the research is ‘help us manage it and tell us what we can do,’” Donald says.