"I want to be a part of curing kidney disease, preventing progression, [finding] effective treatments and making dialysis a better experience for people who have to be on it."
Over the last 13 years, Gwen Herrington has experienced many stages of kidney disease and treatment – from an initial diagnosis in 2008, to dialysis in 2012, and finally, a kidney transplant in 2014.
Receiving a kidney transplant was a critical turning point for Gwen, but it isn’t the end of her kidney journey. “I’m in effective treatment, but the idea of going back on dialysis still haunts me,” she says. “I want to be a part of curing kidney disease, preventing progression, [finding] effective treatments and making dialysis a better experience for people who have to be on it.”
She joined Can-SOLVE CKD in 2016 and has been a valuable patient partner ever since. All Can-SOLVE CKD projects have been selected based on the priorities of kidney patients, but Gwen is a patient partner lead on one project that is particularly important for patients on a daily basis: the “Strategies to enhance patient self-management of CKD” research project.
Kidney disease is complex, and so too can be the self-management strategies. “There is much to learn about diet, medication and so much more. It is often overwhelming,” explains Gwen.
After many years of careful design and consultation with patients, including Gwen, the self-management research team has launched the My Kidneys, My Health website to support kidney patients with self-management.
The online platform allows patients to explore content on their own terms and use personalized tools on the website to support their individual self-management needs. Gwen sees much value in this approach. “I believe that being ‘told’ what to do is less effective than my ‘choosing’ what to do,” she says.
Gwen emphasizes how hard her dialysis experience was, noting that her ability to function in life was drastically affected. This experience underscores the importance of self-management and, for Gwen, the importance of being involved in kidney research.
Her advice is, “Learn as much as you can, take charge of your decisions supported by this. Connect with other kidney patients and be involved in research.”