Kidney Research UK

Routine blood test gave doctors opportunity to treat my kidney cancer

Amy — Mon, 15 Jun 2026 13:16:34 +0000

Routine blood test gave doctors opportunity to treat my kidney cancer

15 June 2026

An aviation management consultant from Surrey has received successful surgery to remove a tumour, after a routine blood test led to a diagnosis of kidney cancer.

Chris Bosworth, 58, displayed no obvious symptoms before his cancer diagnosis, meaning the tumour was unlikely to have been identified without a routine annual blood test at his GP surgery.

He says: “I’d get a little bit of back ache when mowing the lawn or washing up, but I just put that down to age. I felt fine. I’m so thankful that the cancer was identified and dealt with quickly. I was very lucky to avoid the need for treatments like chemotherapy or radiotherapy.

“I hope that sharing my story helps to raise awareness of kidney cancer and prompts other people to consider having their own health checked. Early diagnosis is so important and can be lifesaving.”

Cancer diagnosis

After a routine annual blood test showed suspected problems with his liver function in 2024, Chris was referred for an ultrasound to investigate further.

Chris with his family

Chris says: “I was relieved to be told that my liver was ‘fine for a man of my age’. However, the technician then asked if I’d ever had problems with my kidneys. I hadn’t, but it quickly became obvious that he knew there was a problem now.

“I received a phone call the next day to arrange an appointment with a specialist kidney consultant the following week. The speed at which everything was moving told me it was bad news and I resigned myself to the fact it might be cancer.

“The appointment came and my consultant showed me a 7cm tumour growing in my right kidney, which was visible from my scan. It needed to be removed urgently. It was completely surreal being told that. It felt like it was happening around me and I was just watching, even though I was the one in the chair getting that news.

“The hardest part was sharing my diagnosis with my family. My dad died of cancer when I was 18. He was just 42. Telling my mum and sister about my illness was very difficult. My wife was with me at my diagnosis, but we also had to explain everything to our two sons.”

Kidney cancer treatment

At the beginning of 2025, Chris underwent surgery to remove his cancerous kidney.

He says: “I hadn’t spent a night in hospital since I was born, so it was a brand-new experience for me. The surgery took longer than planned because I had a reaction to the anaesthetic and it proved more difficult than expected to remove my kidney. It was especially tough on my wife, who spent six hours waiting for the surgery to be complete.

“Thankfully, it was a success, and I was discharged after two days. I took about four months off work, living a quieter life while I recovered. Today everything is pretty much as it was pre-diagnosis. The only difference is that I am living with one kidney. However, my kidney function is stable, and it doesn’t hold me back.

“In fact, coming out of the other side of my diagnosis and treatment has given me a new lease of life. You do look at it as a second chance. It has created more energy and urgency for me to do things in life that I have been meaning to for some time.

“This experience has made me much more aware of my own health. I now have blood tests twice a year to check how I am.”

Raising awareness

Following recovery from surgery, Chris shared his health status with connections on LinkedIn and Facebook, letting people know why he had been quieter in recent months.

He says: “I only wanted to update people so I wouldn’t have to answer the same questions for everyone. However, I was taken aback by the response. People left comments about how they now felt able to share their own personal experiences, while others told me it had prompted them to get their health checked. It was very humbling.

“I realised that being open about my story had helped raise awareness and supported others to feel comfortable in talking about what they have been through. It made me feel that I could do something more to help. That’s why I have decided to become more involved with Kidney Research UK.”

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Testing new therapies for children with autosomal recessive polycystic kidney disease

Amy — Mon, 15 Jun 2026 12:42:00 +0000

Testing new therapies for children with autosomal recessive polycystic kidney disease

15 June 2026

Professor David Long from University College London Great Ormond Street Institute of Child Health has received a Kidney Research UK paediatric and rare diseases research project grant of £200,000 to test new therapies for autosomal recessive polycystic kidney disease (ARPKD) that focuses on how cysts use energy. This project forms part of the PKD Partnership, led by Kidney Research UK and the PKD Charity.

New treatments are needed for children with ARPKD

Polycystic kidney disease (PKD) is an inherited condition that causes fluid-filled cysts to grow in the kidneys, gradually damaging them and often leading to kidney failure. The condition is passed from parents to children through faulty genes.

One of the most severe forms is autosomal recessive polycystic kidney disease (ARPKD), a rare condition that places a heavy burden on children and their families from an early age. There is currently no cure for ARPKD, and there are no approved drug treatments to slow or stop the disease.

Focusing on how cysts use energy

In this project, Professor David Long and the team are looking more closely at a protein called AMP-activated protein kinase (AMPK). AMPK controls how cells use energy in a process called metabolism. This protein has already been studied in other diseases such as cancer, obesity and diabetes, where drugs can alter its activity. Now, the team want to know whether a similar approach could work in ARPKD.

As cysts grow, the kidney’s structure becomes increasingly abnormal. The team believes these cysts may depend on energy processes to keep expanding.

To test this, David and the team are looking at lab models of kidneys with a faulty PKD gene to see how changing AMPK activity affects cyst growth and kidney function. They will also compare how metabolism differs between healthy and affected kidneys to see whether altering AMPK with drugs changes their ability to form cysts. Together, this work will show whether targeting cell energy could form the basis of a new treatment for ARPKD.

ARPKD carries a very high burden, with many children going on to develop kidney failure. We want to understand how cysts use energy to keep growing, and whether changing those energy pathways can reverse the severity of the disease. By testing drugs that alter metabolism, we can begin to see if this approach could make a real difference to ARPKD patients.

Professor David Long

Prof David Long

What could this mean for kidney patients?

Targeting cyst energy supply in this way could open the door to new treatment options for children with ARPKD. By slowing cyst growth or reducing kidney damage, these therapies could preserve kidney function for longer and improve quality of life.

Professor David Long adds: “It is crucial to test new ideas for children with kidney disease as treatments that work in adults do not always have the same effects for young patients. By studying how metabolism drives cyst growth, we hope to find new ways to intervene and develop treatments for this patient group.”

Meet the researcher

Professor David Long is a biologist and one of the few non-clinicians in the UK to lead his own kidney disease-focused research group.

“I first became interested in the kidney around 25 years ago and was fascinated by the complexity of the kidney and how many different compartments within the organ come together to carry out the simple job of making urine,” David explains. “But my motivation goes beyond this understanding - meeting patients with kidney disease, including children with PKD, really brings home the importance of developing treatments and I want our research to make a real difference.”

Dr Jennifer Chandler, Dr Daniyal Jafree, Dr Carolina Bebi and Professor David Long

David’s work is focused on advancing therapeutics for children, addressing a real unmet need, while also training the next generation of clinicians and scientists in his laboratory

Take a look at some Kidney Research UK funded researchers who have worked with David:

Dr Daniyal Jafree: The role of the lymphatic system in kidney transplantation: is it good or bad?

Dr Jennifer Chandler: A new treatment target for inherited childhood kidney disease

Dr Carolina Bebi: Could new treatments protect the kidneys and bladder in boys with posterior urethral valves?

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Walking in memory of beloved mum 20 years after losing her to kidney disease

Amy — Fri, 12 Jun 2026 12:59:21 +0000

Walking in memory of beloved mum 20 years after losing her to kidney disease

12 June 2026

This July, 59-year-old Rachelle Temple will take part in the Kidney Research UK London Bridges Walk for the 19th time, in memory of her mum, Betty, who died 20 years ago from kidney disease.

Rachelle, from Hockley in Essex, will be joined by several family members, including her daughters, Nicole and Jessica. She says: “They were only ten and eight when Mum died. Her grandchildren were her life and she couldn’t have loved them more if she tried. I never wanted them to forget their nanny, so we started taking part in the London Bridges Walk together in 2008.

“It's such an enjoyable experience. It feels like one big family, full of support, friendship and love. Everyone becomes your friend for the day. As you approach the finish line, you're exhausted, but people who’ve already completed the walk stay behind to cheer others on. You see people from all walks of life clapping, encouraging and talking to one another. It's incredibly special.”

Kidney Research UK’s London Bridges Walk will take place on Saturday 4 July, starting at 10am from Potter’s Field Park. Anybody can join, taking on either the shorter 2-mile accessible route, or the longer 7-mile walk.

Remembering Betty

Betty contracted tuberculosis at just four years old, causing irreversible damage to her kidneys. Rachelle remembers as a child, seeing her mum’s kidneys failing.

She says: “I would come home and find her in bed, exhausted. My friends would often stay and help me clean the house because she was so unwell. She was in and out of hospital continuously and it was incredibly hard to watch her suffer.

Rachelle's mum, Betty

“She was also taking blood-thinning medication for systemic lupus, which meant she couldn't have a kidney transplant because the risks were too great. Her only option was dialysis. At first she had peritoneal dialysis at home. However, as her kidney disease progressed, she eventually had to travel to Southend Hospital for haemodialysis three times a week, for five hours at a time.

“My mum, Betty, was an amazing human being. Everyone loved her. She had so many friends and when she walked into a room, you knew she was there before you saw her. She had a big personality and an even bigger heart.

“People on dialysis often feel very cold, so Mum came up with the idea of making blankets and started knitting colourful squares. She rallied everyone around her to join in – even I knitted a few. One of her friends helped sew the squares together and before long there were hand-knitted blankets for patients on the renal ward.”

Sadly, Betty died in 2006 at just 63 years old. Rachelle says: “In the end, Mum refused further dialysis treatment because she simply couldn't face it anymore. She was taken from us far too young. I was absolutely grief-stricken.

“Some of the doctors and nurses who cared for her came to her funeral. They even named the room where she received treatment after her. To this day, it’s still known as the Betty DeRose Room. She had a lasting impact on everyone she met.”

Rachelle and family at the London Bridges Walk

Joining the London Bridges Walk

Rachelle and her daughters first joined the London Bridges Walk in 2008, continuing to take part every year since.

Rachelle says: “I remember back then we were given helium baloons, which we released together from Millennium Bridge. My girls would write messages saying, "To Nanny Bet Bet. We love you and will never forget you.” The walk has become an annual tradition for us.

“Even during the pandemic, when large charity events were cancelled, I rallied friends together to organise our own socially-distanced walk in Southend for Kidney Research UK. We all wore purple and raised £250. It was so important to me to keep that connection going.

“This year will be our 19th London Bridges Walk in memory of Mum. I feel fortunate that she lived long enough to know her grandchildren, but being part of #TeamKidney has also opened my eyes to the experiences of so many other families affected by kidney disease.

“There are people taking part who have lost children, parents, friends and partners. Stories like that stay with you. You realise just how much other people have endured and how many lives have been touched by kidney disease.

“Over the years, different friends and family members have joined us for the walk in memory of their own loved ones. My cousin Beverley, who lost her three-year-old granddaughter to polycystic kidney disease, and my friend Sharon, whose brother died from kidney cancer on his 50th birthday. There is so much shared loss, but that's what makes the day so special. It's a chance to honour people who were taken far too soon and ensure they’re never forgotten.

“I know crossing the finish line will be both emotional and rewarding. I always have a little cry when I look at my girls and think about Mum. I hope she would be proud of us. By taking part year after year, we're making sure her memory never fades."

London Bridges Walk

Whether you’re walking in memory of a loved one, celebrating a kidneyversary or supporting someone living with kidney disease, join #TeamKidney at this year’s London Bridges Walk.

Join London Bridges Walk

The post Walking in memory of beloved mum 20 years after losing her to kidney disease appeared first on Kidney Research UK.

Celebrating our first kidneyversary at London Bridges Walk

Amy — Fri, 12 Jun 2026 12:37:56 +0000

Celebrating our first kidneyversary at London Bridges Walk

12 June 2026

A year on from a life-changing kidney donation between two childhood friends living in Portsmouth, the pair are taking on a major charity fundraising event in London to celebrate their kidneyversary.

In May 2025, 64-year-old David Eves donated a kidney to his friend Dave, 67, who needed dialysis for more than six years after his kidneys failed because of polycystic kidney disease (PKD).

Friends, David and Dave

They are walking together alongside hundreds of people at this year’s Kidney Research UK London Bridges Walk on Saturday 4 July, celebrating an important milestone and raising awareness of kidney disease to support others.

David says: “Knowing Dave will be by my side at the walk, no longer tied to a dialysis machine, means everything. He’s back where he was ten years ago, albeit a little older.

“Donating a kidney has been an overwhelmingly positive experience. It hasn’t impacted my life. I am fully fit and can still do everything I enjoyed before. Most importantly, Dave is here to share those experiences with me.

“I’m really looking forward to connecting with others at the walk who’ve been through similar transplant experiences. That sense of community and seeing hundreds of people all wearing a purple Kidney Research UK T-shirt, will be fantastic.”

A 50-year friendship

David first met Dave back in 1974, when the pair were teenagers in Scarborough. David’s mum was in a relationship with Dave’s dad and they lived together as a blended family of seven children for three years until the relationship ended.

David says: “I’ve known Dave, my "almost-brother", for most of my life. As the eldest two of the children, Dave and I were the closest and shared a bedroom. We just seemed to click.

“Dave joined the Royal Navy at 16 and was my inspiration to join too. Eventually, we both settled in Portsmouth with our wives, Lorna and Karen - who are also great friends - and our children.

“When Dave’s maternal grandmother died from PKD in 1984, he was tested and discovered he had inherited the condition. It is a disease which has affected many of Dave’s family members, including his mother, Anne, sister, Tracy, daughter, Katt, and two granddaughters.

“Over time, Dave’s own health gradually deteriorated. He became increasingly unwell and spent more than six years receiving dialysis. I don’t think I fully comprehended the gravity of the situation. It wasn’t until I was watching the medical drama Grey’s Anatomy and saw an episode about transplants and living donors that I started considering becoming one for Dave.”

David and Dave post-transplant

Becoming a living kidney donor

In February 2022, aged 60, David approached Queen Alexandra Hospital in Portsmouth to start the donation process and found he was a direct match for Dave.

David says: “Unfortunately Dave’s wife, Karen, had been told she was unable to be a kidney donor, so I was very happy to put myself forward. Tests showed Dave and I were a match and by April 2023, I’d been signed off to donate. Unfortunately, at that time, Dave was too poorly for surgery.

“It took another two years for Dave to become fit enough for the transplant. During that time, he underwent a quadruple heart bypass and had one of his kidneys removed to make space for the transplanted kidney. Weighing 7kg, it was massively enlarged by the disease.

“More than three years after first enquiring about becoming a donor, the transplant finally took place. My recovery was much better than expected. The pain was manageable and after two weeks of taking it easy, I was back at work.

“Dave’s recovery was more difficult. When he came out of theatre, something wasn’t right, so surgeons had to operate to reposition the kidney. For the next six months, he suffered recurrent infections and spent more time in hospital than at home. In November 2025, he had an operation on his urethra which helped to stabilise him.”

Our first kidneyversary

On 21 May 2026, David and Dave celebrated their one-year kidneyversary with their wives during a meal at a restaurant.

David says: “Sitting there, I looked at Dave and thought, ‘wow, he’s turned a corner’. He looks great. It was a real milestone after such a long journey, with years of tests, waiting and surgical procedures.I feel very fortunate for the exceptional care we received from the transplant team at Queen Alexandra Hospital.

“We are so close now to reaching our fundraising target for the London Bridges Walk, which will help Kidney Research UK to continue shaping the treatment and care of people living with kidney disease.

“If my story, one of positivity and hope, helps ease the worries of even one potential donor, then it will all have been worth it.”

Join Team Kidney

Whether you’re celebrating a kidneyversary, walking in memory of a loved one or supporting someone living with kidney disease, join #TeamKidney at this year’s London Bridges Walk

The post Celebrating our first kidneyversary at London Bridges Walk appeared first on Kidney Research UK.

Teenage kidney patient opens-up about life as a young person on dialysis

Amy — Tue, 09 Jun 2026 12:30:18 +0000

Teenage kidney patient opens-up about life as a young person on dialysis

09 June 2026

A kidney patient from Hackney, London, is speaking out about what it is like to be a young adult on dialysis, as he tries to help others feel less isolated.

Since being diagnosed with chronic kidney disease as a baby, 18-year-old Delano Joseph-Myers has experienced two failed kidney transplants, spending more than half his life as a dialysis patient.

As he waits for a third kidney transplant, Delano attends his dialysis unit three times a week, for four hours each session.

Delano says: “Being the only young adult on my dialysis unit can be lonely. I have family and friends to support me. However, you only really understand kidney disease when you live with it yourself. In the past, I’ve tended not to share how I’ve been feeling, but I want to tell my story to help others understand they’re not the only ones going through this.

“Speaking openly on my social media pages has helped me connect with many young people living with kidney disease. A lot of us have suffered in silence and there will be many more people out there who still feel alone.”

Delano Joseph-Myers

Delano’s story

At just two weeks old, Delano was rushed to Evelina Children’s Hospital where his blood pressure was found to be dangerously high. His kidneys were failing and he was transferred to Great Ormond Street Hospital (GOSH).

By his fourth birthday, he needed to start dialysis. This treatment continued until he received a kidney transplant from a deceased donor at five years old. That kidney functioned for five years, before failing in 2018 when Delano was ten.

By the time he started secondary school, Delano was back on dialysis, waiting for a second transplant. He spent five years waiting.

Delano and his mum

Delano says: “It was tough. I spent more of my life in hospital than I did in school. I was there three times a week for dialysis, for four hours each session. I’d often have to leave school halfway through the day to go for treatment.

“There was a six-month period when my blood pressure was extremely low, and I needed to stay in hospital for dialysis six days a week. I was away from school for so long that rumours started circulating with other kids that I had died.

“I had school lessons at GOSH. However, the treatment was so draining, making it hard to learn. I didn’t do well in my GCSEs because of how much I was affected.

“I felt like the only person going through something like this. I didn't know anyone in my day-to-day life who was affected by similar health problems. It was very isolating.”

What is it like being a young person on dialysis?

In 2023, Delano finally received a second kidney transplant, at 15 years old. However, within two years, this kidney had also failed, leaving him back on dialysis.

Delano says: “It was very up and down with my second kidney. It didn’t wake up straight away and later my body began to reject the kidney, causing it to become infected and swollen. It failed and I’ve been back on dialysis ever since.

“It was gutting but there was nothing I could do. In the end, doctors had to remove the kidney because the swelling was causing me a lot of pain. It was a relief when it was gone. I’m on the waiting list again now, hoping for a third kidney transplant.

“Being a dialysis patient isn’t easy. It is hard juggling school and work against needing to have four-hour-long sessions, three times a week. There are days when I want to give up or not get out of bed, but after I take a minute, I have to keep going.

“It’s hard when there isn’t enough understanding of kidney disease in the wider community. It’s a hidden illness and people can mistake my symptoms for laziness. They just don’t get it. Just because we look ‘normal’ doesn’t mean we are healthy on the inside. You should never judge a book by its cover.”

Delano is passionate about sharing his vast experience of being a kidney patient to help others better understand kidney disease, treatments and medications.

He says: “I want people to know that dialysis doesn’t have to be as scary as you think. If people see that I can do it, maybe they’ll realise they can too. I’ve been living with kidney disease since I was two weeks old, but I don’t let it stop me from living life as best I can. I enjoy being creative and have designed my own clothing brand. I’m also starting a career as a sports coach alongside my delivery riding jobs

“I hope I’ll be able to have a transplant soon, although I’m aware of the lack of kidney donors from Black communities. Maybe if people see what patients like me are going through, it’ll help the consider becoming organ donors to improve others' lives.

“My wish is that one day I can have a kidney transplant that will last me a lifetime and allow me to fully pursue my dreams. Until then, I will keep getting up every day and giving it my best.”

Kidney Community

A new dedicated online forum for kidney patients and carers, helping people connect with others who might be going through similar experiences.

Co-developed with patients and carers, Kidney Community is a welcoming, safe space where you can share experiences, ask questions and find information and support.

Visit Kidney Community

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Donate now

The post Teenage kidney patient opens-up about life as a young person on dialysis appeared first on Kidney Research UK.

Vital funding allocated to kidney research

Amy — Mon, 08 Jun 2026 16:55:00 +0000

Vital funding allocated to kidney research

08 June 2026

Kidney Research UK is set to receive almost £1m to expand the UK’s renal research capabilities by attracting and retaining more scientists and clinicians. The money, from the National Institute for Health and Care Research, is part of a new package of £37m funding being awarded to 89 medical research charities in the UK to support early career researchers.

The funding will enable the charity to boost interest in working in renal research, and draw people from multiple disciplines, with a broad range of skills and perspectives.

The scheme is being delivered in partnership with the Association of Medical Research Charities (AMRC), which Kidney Research UK is a member of.

Nicola Perrin, chief executive of AMRC, said: “Charities do more than invest – they connect researchers with patients and communities, grounding research in real-world needs and inspiring long-term careers. We are proud to have helped bring this forward and hope it will strengthen the clinical research workforce by retaining talent, accelerating innovation and improving outcomes for patients.”

Dr David Crosby

Dr David Crosby, chief research officer at Kidney Research UK, said:

“It is more important than ever that we support and develop researchers in whose hands lies the future of the 7.2million people living with kidney disease in the UK. Our research community must find new ways to treat, prevent and protect people from the devastating consequences of this condition. Research over the coming decade will be critical to pulling our NHS back from the precipice if the demand for treatment continues to grow as we have predicted.

“We are very grateful for these essential funds and extend our thanks to the AMRC for their work in helping secure this.

“This funding is an important contribution to our work, but the challenge is vast and we are grateful to all our supporters for their ongoing loyalty.” 

Read our latest research news

Testing new therapies for children with autosomal recessive polycystic kidney disease

15 June 2026

Vital funding allocated to kidney research

8 June 2026

Undiagnosed chronic kidney disease endangers millions of lives

3 June 2026

Can virtual reality help reduce symptoms in dialysis patients?

2 June 2026

Could a new blood test identify kidney damage earlier?

27 May 2026

A new approach to CMV vaccination for kidney transplant patients

14 May 2026

IgAN patients in Scotland to gain access to new treatment

12 May 2026

Preventing harm from BK virus in the kidney transplant community

6 May 2026

Could new treatments protect the kidneys and bladder in boys with posterior urethral valves?

5 May 2026

Using urine samples to test new gene therapy treatments for nephronophthisis

5 May 2026

Could urine hold the answers for rare kidney disease diagnosis and care?

1 May 2026

New draft guidance recommends treatment for more adults with high potassium and chronic kidney disease

13 April 2026

Researchers identify critical window in deceased donors with the potential to assess and improve the health of donated kidneys

1 April 2026

Bringing the voice of children and young people into kidney research

30 March 2026

Helping more patients and families get a diagnosis for their kidney condition

25 March 2026

New research insights: understanding how the immune system responds to cytomegalovirus in kidney transplant patients

23 March 2026

New research on care and support for children and their families receiving conservative care for kidney failure

4 March 2026

Giving patients a voice in the development of new treatments

2 March 2026

Looking for new ways to treat infection-related kidney disease in children

16 February 2026

Opening the door to what’s possible with NURTuRE

10 February 2026

Why not make a donation now?

Every £ counts towards transforming treatments for people living with kidney disease.

Donate now

The post Vital funding allocated to kidney research appeared first on Kidney Research UK.

SMC accepts sparsentan for adults living with IgA nephropathy in Scotland

Amy — Mon, 08 Jun 2026 13:42:58 +0000

SMC accepts sparsentan for adults living with IgA nephropathy in Scotland

08 June 2026

Kidney Research UK has welcomed the Scottish Medicine Consortium’s acceptance of sparsentan (Filspari ®) for use in some adults in Scotland living with primary immunoglobulin A nephropathy (IgAN), published today.

The SMC decision takes into account patient views gathered by Kidney Research UK through a focus group, and those expressed at a Patient and Clinician Engagement (PACE) meeting at which Kidney Research UK’s patient expert Mark Devlin talked about his lived experiences of the condition.

“I would have loved to have had a treatment that would have halted or slowed the progression of disease in the hope of avoiding dialysis altogether,” said Mark, who has experienced four kidney transplants.

He added: “I’m over the moon with the decision. It’s fantastic to see new treatments being made available for people like me and shows how far the science and understanding have progressed since I was first diagnosed.”

The Scottish Medicines Consortium’s (SMC) decision applies to patients who are either losing ≥1.0 g/day protein in their urine a day, or whose urine protein-to-creatinine ratio is ≥0.75 g/g (equivalent to ≥85 mg/mmol). It only applies to people whose condition has not responded adequately to current standard of care (maximally tolerated ACE inhibitors or ARBs and SGLT2-is).

“This is very welcome news for people living with IgAN in Scotland,” said Liz Barnard, Kidney Research UK’s Life sciences policy manager. “It could be life-changing for some, potentially enabling them to have treatments that will prevent disease progression rather than managing symptoms.

“We are very grateful to Mark and the other patients for sharing their experiences with the SMC. This was an opportunity to really make a difference.”

This is the second treatment approved for use in NHSScotland specifically for people living with IgAN and follows a decision to approve budesonide (Kinpeygo®) last month.

What is sparsentan?

Sparsentan (Filspari ®) works by blocking two hormone receptors involved in processes that damage the kidney, reducing the high levels of protein that otherwise leak into the urine, and slowing down the progression of the disease.

Treatment could therefore slow down, or even prevent, disease progression and mean that patients with IgAN – most of whom are under 40 years old when diagnosed – could be spared the need for gruelling dialysis or a kidney transplant.

Important information for patients

If you are living with IgAN, please speak to your healthcare professional about how best to manage your treatment. This article is intended to provide general information and does not replace medical advice.    

If you experience any side effects, speak to your doctor, pharmacist or nurse. You can also report side effects directly via the https://yellowcard.mhra.gov.uk. By reporting side effects, you help improve the safety of medicines.  

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The post SMC accepts sparsentan for adults living with IgA nephropathy in Scotland appeared first on Kidney Research UK.

Exceptional kidney advocate champions early diagnosis and organ donation

Amy — Fri, 05 Jun 2026 15:00:14 +0000

Exceptional kidney advocate champions early diagnosis and organ donation

05 June 2026

A kidney transplant recipient who spent ten years on dialysis, is now dedicating her time to spare others from a lifetime of challenging treatments.

Hilaria Asumu, from Manchester, has made it her mission to raise awareness of kidney disease, becoming a community ambassador and blood pressure volunteer with Kidney Research UK.

Ever since receiving her own transplant in 2018, Hilaria has been raising awareness of the life-changing impact of organ donation, encouraging people to consider becoming donors.

Following dedicated training from Kidney Research UK, she also offers free blood pressure checks in her community, helping people to understand if they are at risk of kidney problems and encouraging them to seek healthcare that could lead to an early diagnosis. This is vitally important, as high blood pressure can both increase your risk of developing kidney disease and be a sign of kidney disease itself. Identifying problems before someone reaches kidney failure could delay or even remove the need for dialysis or a transplant.

Hilaria Asumu

Hilaria, 53, says: “I come from Nigeria originally and we don’t tend to speak about illness or death. Becoming an organ donor is not a topic that is often considered, meaning there are a lack of donors from the Black community. That’s why it is important to me to share my story, to encourage people to think differently.

“People in my community, especially men, are reluctant to visit the doctor when they are concerned about their own health. A lot of people have family living abroad, meaning they are financially supporting extended family, in addition to their own household. There is a pressure to avoid being unwell or visiting the doctor.

“It means kidney disease often goes undiagnosed until people’s kidneys have failed and dialysis or a transplant is needed. That’s why I regularly go to community events and places like churches, mosques or the local supermarket, to take health information and carry out blood pressure checks for people who may not seek it out themselves.

“If we can identify people’s high blood pressure and encourage them to see their GP and get an earlier diagnosis, it means steps can be taken to protect their kidneys. It is an amazing thing to be a part of.”

Hilaria’s story

Hilaria is all too familiar with the harsh realities of kidney failure. When she had a miscarriage at 22 weeks pregnant in 2008, she was rushed to hospital by her husband. She woke up in intensive care to find that she had been in a coma, having experienced two cardiac arrests, multiple organ failure and septicaemia (a serious infection of the bloodstream).

Hilaria says: “It was completely disorienting. I couldn’t understand where I was or what was happening. I don’t have a family history of health problems and I had been perfectly fine until this time. To be told I had kidney disease was devastating. We were all crying and wondering what it would mean for my life.”

Hilaria needed emergency dialysis which helped her kidney function bounce back. However, in 2010 another miscarriage left her in a second coma with septicaemia and a collapsed lung.

Hilaria says: “My husband was told that if I didn’t come out of my coma by a certain date, that they would have to turn off my life support machine. Amazingly, I woke up on the day they were going to do that.

“I’d survived, but this time I was told I’d need dialysis until a transplant became available. That took ten years because I had a high level of antibodies, making it difficult to find a match. None of my family were able to donate and I thought my life was over. I cried every day because I hated dialysis. It restricted my life a lot.”

Receiving a transplant

After a decade of waiting, Hilaria finally received the phone call she had been yearning for – to tell her a kidney had been found.

Hilaria says: “I felt every emotion. I was stunned, excited and euphoric. I didn’t know what to say or what to do. All I heard was that I needed to get to hospital. Waiting so long had caused me to lose my faith. I’d prayed, begged and promised. Nothing was working. I thought God had abandoned me. That day I got my faith back.”

“Once I’d had the transplant it felt like this huge cloud had gone. I no longer needed dialysis and could get back to my life: being a mum to my two children, travelling and enjoying life, without being attached to a machine. I can’t describe the joy. It’s hard to put into words just how grateful I am to my donor and their family.”

Becoming a volunteer

Hilaria immediately wanted to make a difference for others, becoming an ambassador for NHS Blood and Transplant (NHSBT) and Kidney Research UK.

She says: “I wanted to give back and talk to people in my community. I love sharing my story. I regularly go to churches and mosques to speak about my experiences. I even got permission from my local ASDA to speak with customers over the tannoy system. It’s rewarding to build an understanding of kidney disease, that hopefully means more people will receive an earlier diagnosis or consider organ donation.

“When Kidney Research UK developed the blood pressure volunteering role, I was so keen to be involved. People are often surprised if their blood pressure shows as being high. I’m not a doctor, but I can recommend people see their GP and provide information to support them in looking after their health.

“I find volunteering so rewarding and there is still a lot of work to do. I’d love for more people to volunteer. You don’t need any experience – just passion! You will be supported by Kidney Research UK in your role. When you get into volunteering, you don’t look back. It’s so satisfying.”

Find out about volunteering

My kidney failure was mistaken for laziness

Amy — Fri, 05 Jun 2026 08:27:30 +0000

My kidney failure was mistaken for laziness

05 June 2026

A carer from Hull found herself labelled as ‘lazy’, when she was left exhausted by an undiagnosed condition which caused her kidney function to deteriorate.

Eso Osagiede

Signs of kidney disease

Eso Osagiede, 39, says: “I was always sleepy as a teenager into early adulthood. But what nobody realised was that I was fatigued because my kidneys were failing. I now recognise several signs from my childhood that, with more awareness, could have been identified long before my kidneys failed in 2012.

“I want to share my story so that other people are aware of warning signs and can seek help at an earlier stage. I hope that will mean steps can be taken to prevent kidney failure, removing the need for people to have treatments such as dialysis or a transplant.

“I’ve been receiving dialysis three times a week, for the past five years while I wait for a second transplant. There is not much fun in my life now, but my mind and spirit are unbroken. I try not to let what is happening in my body get to my head. It is hard sometimes, but I try to stay strong.”

I wish I’d known these signs of kidney disease

In the 15 years before her kidneys failed, Eso experienced recurrent symptoms which, in hindsight, were signs of her kidney disease.

She says: “When you come from a healthy family, it is easy to be ignorant to health problems. There are always ways to explain away symptoms which seem small at the time. Along with fatigue, I’d had puffiness in my face and swollen ankles. However, we just assumed it was weight gain. After my kidneys failed, I realised I’d also not been passing enough urine, and my shortness of breath was because my body was retaining water.

“I’d had a lot of urine infections growing up and my lack of awareness of kidney health meant I was doing harm in how I tried to prevent those infections. I often held my urine to avoid using public toilets as I thought a lack of cleanliness in those restrooms could be a contributing factor. This meant restricting the amount of water I drank outside of the home.

“As my kidney problems remained undiagnosed, there was no opportunity to prevent or delay kidney failure. I had just graduated from university and was working as a teacher, then suddenly found myself in hospital needing dialysis and a transplant. It broke me.”

Treatment for kidney failure

Eso needed dialysis for a year before receiving a transplant from her mother in 2013. She says: “Mum gave me my life back but sadly after seven years my transplant failed when I caught the Covid-19 virus in 2020. It was traumatic to be told I needed dialysis again.

Eso Osagiede

“I had been excelling in my career as a teacher but had to make the difficult decision to leave that profession because of how much dialysis drained me. It has also prevented me from pursuing my ambitions as a singer. The treatment has limited my life in many ways, making it harder to travel and socialise with friends. I try not to think about when my transplant will happen. I just keep faith that it will happen eventually.

“While I wait, I want to inspire others going through similar challenges and raise awareness through my Tik Tok page and Eso Kidney Alive Foundation in Nigeria. When I was first unwell, I worried about the stigma and people seeing me as fragile. Now I’m really glad I opened up to talk about my experiences.

“It has given me the chance to talk about the importance of organ donation, particularly increasing the number of donors from Black communities. There are so many cultural and religious beliefs that put people off. I would probably have shared similar feelings without having been through it myself. Mum was in her 50s when she donated a kidney to me. She’s still healthy and I hope that shows that being a donor is something we can all consider.

“Organ donation is life changing. There is so much I want to do once I’ve had my second transplant. I’d love to get back to teaching and singing. I want to have lots of life experiences and travel more again.”

Kidney health check

There are estimated to be 7.2 million people in the UK currently living with chronic kidney disease, more than 10% of the entire population. However, symptoms can often remain undetected or attributed to other causes.

Knowing your risk of kidney disease could help you and healthcare professionals to protect your kidneys, preventing or delaying the need for life-altering treatments such as dialysis or a transplant.

Take kidney health check now

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Every £ counts towards transforming treatments for people living with kidney disease.

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The post My kidney failure was mistaken for laziness appeared first on Kidney Research UK.

Undiagnosed chronic kidney disease endangers millions of lives

Amy — Wed, 03 Jun 2026 12:57:43 +0000

Undiagnosed chronic kidney disease endangers millions of lives

03 June 2026

Millions of people worldwide are at risk because chronic kidney disease (CKD) is going undiagnosed, according to global research being unveiled this week.

Former Kidney Research UK fellow, Dr Jennifer Lees has led an international collaboration on the research being published in The Lancet and shared at the European Renal Association conference in Glasgow. Their work details the full extent of the healthcare burden caused by CKD, including its poor diagnosis rates and the complications and risks around delayed treatment. The team of global experts are calling for a renewed focus on CKD diagnosis and treatments.

Chronic kidney disease currently affects 844 million adults worldwide, is listed by the World Health Organization as the ninth leading cause of death globally and is projected to become the fifth leading cause of death by 2040. Kidney Research UK estimates that around 7.2m people have CKD in the UK.

The research follows a major report published by Kidney Research UK in 2023 that identified kidney disease was growing so rapidly it had had become a UK public health emergency that threatened to overwhelm the NHS by 2033.

Early diagnosis is critical

Early diagnosis of CKD is critical for treatment success, and the condition can be detected using a simple and affordable urine test; however, the test isn’t routinely used across all healthcare settings, and often only when kidney disease has already progressed.

People with mild to moderate CKD can often appear healthy and well. Symptoms in the early stages (such as itchy skin, tiredness, nausea, difficulty concentrating, being out of breath, poor appetite, increased need to urinate, blood in urine), can also be mistaken for other health concerns. Symptoms may develop only in the most severe stages, or at the worst, when the kidneys have failed and only dialysis or kidney transplant can keep the patient alive. The lack of early symptoms likely contributes to low rates of diagnosis and awareness.

The research outlines that in high income countries like the UK, an estimated 30-50% of CKD cases are not diagnosed early enough to receive timely intervention. And the percentage of undiagnosed cases in middle and lower-income countries is thought to be much higher. In some groups, the percentage of late diagnosis is particularly high: white men were found to be up to twice as likely to receive a timely diagnosis as women and people from other ethnic groups. A study in the US has shown that even among individuals who do have a diagnosis of CKD in their medical record, 9 in 10 are unaware they have the condition.

Despite being recognised by both the United Nations and the World Health Organization as a major global health concern in recent years, progress in improving the diagnosis of CKD remains slow.

Dr Jennifer Lees

“Chronic kidney disease remains one of the most concerning conditions currently impacting global health. The overriding message from our series of research papers is that there remains a pressing need for attention and resource to be focused on this condition.

“There is huge potential to improve early diagnosis, treatment and healthy lifespan by testing urine for protein routinely across a range of healthcare settings. This may be particularly important in those most at risk of under diagnosis, including non-white populations and women.”

Dr Jennifer Lees, senior clinical research fellow at the University of Glasgow and honorary consultant nephrologist at NHS Greater Glasgow & Clyde

Late diagnosis can be devastating

The researchers argue that health systems are failing to put measures in place to ‘catch’ people who could be at greater risk of developing CKD early, such as people with diabetes, high blood pressure or heart disease, for example by running annual urine tests.

The consequences of late diagnosis can be devastating, especially if someone ends up in kidney failure. It can mean people struggle to cope with dialysis, are unable to work and support their families, and their life expectancy is severely restricted. In the UK alone, thousands of lives could potentially be saved with earlier diagnosis and treatment.

Alison Railton, director of policy at Kidney Research UK, said: “Kidney Research UK has shown that the failure to address the diagnosis crisis in the UK alone could result in as many as 650,000 more lives being blighted by advanced chronic kidney disease and the annual cost of CKD to the economy almost doubling to an eye-watering £13.9billion by 2033.

"Governments need to prioritise resourcing health services to diagnose at-risk patients, such as those with heart disease, high blood pressure, or diabetes, earlier, and deliver urgent, preventative care, or millions of patients and economies worldwide will suffer the consequences."

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The post Undiagnosed chronic kidney disease endangers millions of lives appeared first on Kidney Research UK.

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Routine blood test gave doctors opportunity to treat my kidney cancer

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