As you can imagine, World Kidney Day is an important day in the renal world.
It is an opportunity to raise awareness of key issues around kidney health and conditions. This year we are having a ‘big one’ with stalls and activities throughout the Hope building. However, behind the scenes, exciting things have also been happening to build on great work that the department has commenced in the past – and World Kidney Day represents an almost symbolic start to this.
My name is Bob Ward, and during my 4 months in the renal department as the Quality Improvement Facilitator, I have met many passionate and enthusiastic individuals. Working with patients, patient groups, clinicians, admin, and charities, I have been able to see and hear about great work that has World Kidney Day happened or is happening within the department. So let me give you a roundup of what’s going on.
Janet Cairnie is leading the successful complementary therapy program that has now delivered over 400 treatments to our dialysis patients at Salford, Wigan, Bolton, and Oldham dialysis units – with ambitions to expand it to Rochdale and the recruitment of more volunteer therapists. In her blog, Janet discusses the benefit of the program to patients’ experiences of dialysis and how it can improve their wellbeing.
Alongside this, developing how we communicate has been an important focus of my role.
On World Kidney Day you will see blogs, articles, and videos from patients and staff being shared through the new Salford Royal Renal Department Facebook page. The new page will allow us to share these stories as well as news, information, and volunteer opportunities with patients and their families more conveniently and effectively.
There is also ongoing work to set-up a peer support program for kidney patients at Salford, Bolton, Oldham, Rochdale, and Wigan dialysis units. Peer support can be a powerful means of patients (and their families) supporting each other with their diagnosis or treatment. Jane Ascott, a seasoned dialysis nurse of over 18 years, is leading on the set-up of the program; she blogs about what’s involved in peer support. Also, watch our video with Eleri Wood, a peer support nurse from King’s College Hospital, who answers questions on what peer support is and its benefits.
Building on previous dialysis-related patient experience work, where units delivered all kinds of exciting things such as barge trips, theatre trips, culture days, and bingo/quizzes on dialysis – we will be building a network of volunteers to make dialysis less boring and more engaging/supportive environment.
And finally, exercise for kidney patients will be another project that will have a real impact on the health and wellbeing of patients.
Currently, we have a PEDAL trial ongoing in the department which is exploring the cardio benefits to patients with stage 5 kidney disease. As part of the project, patients participate in cycling exercises whilst on dialysis. However, these benefits are not just physical as Garry, one of the PEDAL physios describes.
Today is known worldwide as World Kidney Day. Our kidneys are amazing organs that provide humans with vital functions to keep us healthy but are often forgotten about when compared to the heart and lungs. World Kidney Day aims to World Kidney Day raise awareness of kidneys and provide the public with information on how to keep our kidneys healthy.
Currently, over 1 million people in the UK have kidney disease they aren’t even aware of. Unfortunately, known kidney diseases more often than not lead to the need for kidney transplantation. Almost 5000 patients are waiting on a kidney transplant, of that 5000 only 72% of patients will ever receive one.
Our kidneys have several roles within the body including the filtration and cleaning of our blood, controlling the body’s fluid content, and regulating our blood pressure. Every time our heartbeats, 25% of our blood flows through the kidneys – that’s higher than the blood World Kidney Day flow to the brain. Filtration is achieved through special kidney structures called nephrons, there are approximately 1.15 million of them throughout the kidneys – stretched out end to end and they would cover over 8km in length!
However, the accurate and useful diagnosis of kidney disease is fraught with challenges. Many diagnoses describe the appearance of the disease without revealing knowledge of the cause. This type of diagnosis offers limited use in directing patient treatment.
One example is the kidney disease Alport syndrome (AS), which was first described in 1927.
For more than 60 years after its discovery, the cause of AS remained unknown. It was diagnosed by blood being found in the urine, most frequently in teenage males. This was accompanied by progressive hearing loss and the characteristic microscopic World Kidney Day appearance of the kidney cells which filter our blood. Fast forward to 1990 and the genetic cause, mutations in COL4A5 located on the X chromosome, was discovered.
This enabled researchers to investigate how this gene functions normally and how alterations in the gene product cause pathology. Furthermore, this also revealed the reason males are more often impacted. The X chromosome is sex-linked; males have one X World Kidney Day chromosome whereas females have two. This means that males have one copy of COL4A5 and a mutation here can lead to Alport syndrome, whereas a female would require mutations to both of their COL4A5 genes. Subsequent investigation revealed that mutations in related genes, COL4A3 and COL4A4 located on chromosome 2, also cause AS but not in a sex-linked fashion.
Although primarily a disease that affects kidney function, the eyes and ears are frequently impacted in AS. This is because the same genes required within the kidney filters (COL4A3, COL4A4, and COL4A5) are required to support the specialized sound-sensing hair cells in the ear and the cornea in the eye.
Now, due to the contribution of many researchers, AS is the best-characterized genetic kidney disease. However, despite this fact, there are still no targeted therapies. Currently, to prolong the survival of the kidney, patients receive angiotensin-converting enzyme inhibitors and angiotensin receptor blockers to reduce blood pressure. The kidneys work extremely hard as they are exposed to 25% of the cardiac output; therefore, reductions in blood pressure helps to protect World Kidney Day from the force.
More research into AS is still required and to support this community, patient families, physicians, geneticists, researchers, industries, and funding organizations from around the world meet annually World Kidney Day at workshops to investigate new avenues of AS research. I have been fortunate enough to attend and interact with this community at meetings in Göttingen, Glasgow, and London. There is much optimism with large numbers of pharmaceutical World Kidney Day companies taking a serious interest in AS. The collaboration between clinicians, patients, and researchers is key to accelerating the discovery of new therapeutic approaches for patients with this kidney disease.