News

Fiona Loud 

A delayed kidney disease diagnosis can affect far more than treatment. It can leave people with little time to understand what is happening, prepare for what comes next, or make informed choices about their care. 

For ISN Patient Liaison Advisory Group member Fiona Loud (UK), the warning signs stretched back years. Kidney damage was first identified after the birth of her daughter, but it was another five years before routine screening for an unrelated problem revealed something was seriously wrong. Fiona was eventually diagnosed with kidney cancer and tuberous sclerosis. She went on to spend five years on dialysis before receiving a kidney transplant from her husband.  

Looking back, Fiona says: “I would very much like to see a system that is better at detecting a condition before it becomes a life-threatening problem. Once identified, I would like to see active treatment and advice; all I was ever given was blood pressure medication and iron.” 

Her experience now informs her extensive advocacy for earlier detection, better access to services, and greater choice for people living with kidney disease. 

Richard Knight 

For Richard Knight (USA), the journey was also marked by delay. While under primary care, his hypertension went unmanaged, and abnormal creatinine results were not treated with the urgency that he later came to understand was required. With unchecked progression of his kidney disease, he needed dialysis with little opportunity to prepare or understand options.  

He also describes the daily, quality-of-life effects that continue long after diagnosis: strict medication schedules, fatigue, infection risk, and the emotional strain of living with uncertainty. “Beyond the physical, there is an invisible emotional tax: the hyperawareness that your health is on borrowed time, managed but never fully resolved. Navigating a healthcare system built around acute care, not chronic management, remains one of the most persistent challenges.” 

Fiona Loud and Richard Knight’s experiences show why listening closely to patients and recognizing the signs earlier are essential to better kidney care and health. While earlier diagnosis cannot remove the challenges of living with kidney disease, it can give people something crucial: time. Time to understand what is happening, consider treatment options, and make decisions about their lives with greater confidence.  

Look out for Rita Charon’s WCN’27 plenary talk: “Narrative Power for Patients and Clinicians: Partners in Health and Care” at WCN’27.