It was a full house at the 2018 IgA nephropathy patient information day, which took place in London on 24 November. Led by researcher, Dr Karen Molyneux, and Professor Jonathan Barratt from the IgA Nephropathy research group at Leicester University, over 60 patients and family members came together to find out more about their condition and hear about the research discoveries that are helping to improve lives of IgAN patients.
‘It makes you realise you are not alone when you see other people going through exactly what you’ve been through.’
IgA Nephropathy is a kidney disease caused by the deposition of a blood protein called IgA in the filter units of the kidney. These filter units then become inflamed and damaged - a condition called glomerulonephritis. In 30% of patients this damage resolves itself with conservative clinical treatment; however, 40% of patients develop chronic kidney disease (CKD) and the remaining 30% progress to end stage renal failure (ESRF) requiring dialysis or a renal transplant.
Patient information days are an opportunity to bring together patients, clinicians, and researchers to have informative discussions about a condition in a friendly and safe environment. Patients who know more about their disease do better and the days are designed to provide them with information about symptoms and causes, through to treatments and research breakthroughs. All patients and family members get a chance to personally ask questions of the medical experts present.
Why are such days so important?
IgAN patient Brooke said: ‘I really enjoyed the day. It meant I could understand my condition a lot better, but more importantly it makes you realise you are not alone when you see other people going through exactly what you’ve been through – in all different ages. It was really enjoyable and the doctors were all amazing – they give us hope really.’
Professor Jonathan Barratt said: “Patients really want to know about their disease and don’t know where to go to find it. So, having a patient information day to address those concerns is really important to help patients understand about their disease.
“I think it’s very humbling when patients give up their time, their blood, their urine and all other bits of body, for research. And actually, it’s only fair and right that we let them know what we’ve been doing with that. And we let them know what discoveries we’ve found and how that might ultimately lead to improving their lives and for the development of new treatments. So, I think it’s absolutely essential to be able to feedback and give back to the patients how we’ve benefited from their involvement in our research.”
Phil, kidney patient and leader of Kidney Research UK’s Lay Advisory Panel, said: "I think that days like this are enormously important for three reasons. They are important because it gives an opportunity for a group of patients to come together to share experiences and to learn together in a way that they never do. Most patients rarely meet other patients, except in clinic, which is a fairly traumatic experience. The second reason is that it gives us an opportunity for international experts to share their work and background information on the field with patients. And thirdly it gives them an opportunity to actually engage with a major important charity, like Kidney Research UK, who are funding research which ultimately will lead to kidney problems being cured."
Research nurse Justyna said: “First, these days enable clinicians to better understand our patients. Being outside of a clinic or a routine appointment, gives us an opportunity to show patients what goes on behind the scenes and to share information with them.
“Secondly, we are able to engage directly with patients and encourage them to be more involved with research, including with clinical trials. And that is important”.
The day was supported by University of Leicester, Kidney Research UK, Kidney Care UK and the Wellcome Trust.
The event was live streamed on Facebook.
Kidney Research UK is dedicated to helping patients engage with research and are eager to support other groups in doing this too. Find out more about patient days.
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