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Kidney care for kids: a World Children’s Day conversation with Dr Louise Oni

17 November 2023

For World Children’s Day, we sat down with Dr Louise Oni, a leading children’s kidney doctor and researcher at Alder Hey Children’s Hospital and the University of Liverpool to offer a glimpse into the realities, challenges and triumphs that come with taking care of the youngest members of our community.  

We are proud to be supporting Louise in her important research into the disease called immunoglobulin A (IgA) vasculitis. This is a condition that causes the immune protein IgA to collect in the small blood vessels throughout the body, causing them to become inflamed and leak blood. It is more common in children, and it can cause rashes, tummy pain, joint pain, and kidney damage. Most children go on to make a full recovery, but 1–2 in every 100 will go on to develop kidney failure. Louise’s vision is that no child with IgA vasculitis should get chronic kidney disease.

Female with long dark hair with name badge lanyard, wearing a blue shirt
Dr Louise Oni

Can you give us an overview of how you became interested in children’s kidney medicine? 

I first became interested in children’s medicine whilst working at Manchester Children’s Hospital where I was lucky enough to be able to rotate between the different departments. It was the children’s kidney team there who inspired me into the world of kidney diseases, and I was fascinated by the scope that included managing patients who were very acutely unwell to those who have long-term kidney diseases.

This inspired me to begin a career in children’s kidney medicine that then went on to include a laboratory research career after I spent time with the incredible research team at Bristol Renal. I then had the opportunity to do a PhD at Alder Hey Children's Hospital looking at inflammatory kidney disease and that kick started a career dedicated to children’s kidney disease.

Why do you think this is such an important area? 

Childhood is a really unique period of growth, development and learning, and you can't replace that time. We want every child to live their very best life, regardless of kidney disease, and we want to support them to ensure that they can fulfil their potential. 

It is also important to remember that, as well as the impact on the child, kidney disease can affect the whole family, so our multi-disciplinary teams are there to support everyone.  

Please could you tell us about your current research projects with Kidney Research UK? 

Our first Kidney Research UK grant allowed us to explore the causes of the condition called IgA vasculitis. As mentioned, this condition is more common in children than adults, with relatively little known about it. We've been able to carefully study the IgA protein that causes this condition and investigated the similarities and differences to the more well-known condition IgA nephropathy. The grant allowed us to start our research and recruit an early-career scientist who has progressed to get a more senior role of a Kidney Research UK non-clinical scientist fellowship and a position at the University; it's been incredibly successful in developing the kidney research capability in Liverpool.

Excitingly, from next April we will be taking this research one step further and starting a project called the SISTA study. The SISTA study will follow patients from the moment of diagnosis with IgA vasculitis to try to learn about what might be happening in the very early stages of the disease before kidney disease happens. This information will help us to identify when and how to treat the condition.

Dr. Oni and Dr. Chetwynd in the research lab wearing white coats and green latex gloves and looking at samples in a test tube
Dr. Oni and Dr. Chetwynd demonstrating some of the small devices that may be used to collect samples from patients

Why is it so important to study rare diseases in children, and what are the biggest challenges that yourself and other researchers encounter? 

At the moment, the work on new treatments and the systems to test new treatments in research of rare diseases are designed for adults. We know that around 75% of rare diseases will begin in childhood, so we need to invest in improving the systems and encouraging everyone to include children in research to allow new treatments to reach the patients with the biggest need.

If we can stop kidney failure in children and improve the health of children, this in turn will benefit both the child as they become a healthier adult, and our colleagues who will take over their care when they reach adulthood. I believe working closely with the world-leading adult kidney doctors and researchers is the key to trying to improve treatments for rare diseases in children. By working together as one big kidney team there's a massive opportunity for us to accelerate research in the UK.

We can see from your projects that working with patients and their families is really important to you. Please can you give some details of how this has shaped your research? 

I've always been trained to value the voice of patients and to really include patients from the very early design of research and that's something that is a core part of all of the work that we do here. We understand that if you're living with a condition, you become the expert and we really value that expert patient voice. We also work hard to make sure that we engage with a range of different patients with different backgrounds to make sure that our research is truly representative of the entire community. We have done this through workshops, information events (online and in-person), science clubs, ‘research ambassadors in schools and through social enterprise companies in the community.  

We’ve also worked with Kidney Research UK’s Kidney Voices for Research, which has been a fantastic resource. To give an example, we have a project where we are developing a blood test where, instead of a conventional blood test, patients can send finger prick dried blood samples which could be taken at home. It was only by speaking to patients that we realised just how important this is for kidney patients as they reminded us of the need to save their veins for fistulas and dialysis in the future, so this really motivated us to focus on the work we are doing and increased our drive to bring this to benefit patients as soon as possible. 

What are the most rewarding aspects of working with children who have rare kidney diseases? 

Seeing patients and their families achieve things, despite the odds, is something that I find incredibly rewarding. I don't think there's any children’s doctor who doesn't enjoy the GCSE and A-level results time of year. These big milestones are even more important when we know that some children have been battling against the odds to achieve them. We all work together as one big team with our patients and families, and we share the highs and the lows. But the highs are often extra nice because we know that behind the scenes, children living with kidney disease have had to use a lot of resilience to earn those achievements.

I also really enjoy the times when patients move from dialysis to having a kidney transplant because we know that this does improve their quality of life and health. We also get excited when there might be new treatments in the field such as, eculizumab for atypical haemolytic uremic syndrome, which has transformed this disease for many patients.

From a research perspective, the thing that I find most rewarding is not the prizes or papers that we can achieve, but how we can impact people’s lives.

How has working with Kidney Research UK helped your career? 

I can’t put into words how much they've changed my career. The drive, community, passion, and energy that they bring is just phenomenal and with that energy you're able to then create change and impact.

I feel that they have been instrumental in my early career but also in trying to strengthen research in Liverpool, where prior to my research programme there was very little academic research. We now have a critical mass, an energy, and some great data and research that we know will bring positive changes to the lives of our patients locally and on a wider scale. I will forever be grateful to Kidney Research UK, and I think that the last few years is just the beginning of what will be a productive and long-term relationship.

We would like to thank Louise for taking the time to speak to us, and for everything she is doing for young kidney patients. We look forward to keeping you updated on her amazing research!

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