Kidney Research UK

12/02/2026

Living with a chronic physical condition, such as kidney disease, can have a huge effect on our mental health and wellbeing.

This we’re resharing Julia’s story to highlight the impact on young people and their families.

Julia was diagnosed with cystinosis – a rare condition which affects the kidneys and eyes – when she was just two years old. Now seven, she is navigating a life plagued by unpleasant symptoms and treatments.

Her mum, Kirsty, says: “Julia is a very strong-willed child, but the impact of her condition is relentless. Her life is constantly interrupted. She needs 27 doses of medication every day to try and prevent kidney failure. That means everything gets cut short, including attending school, seeing friends and enjoying hobbies, like dancing.

“We don’t get much sleep, as we need to be up every six hours for Julia’s medication. She struggles with focus and tiredness because of this. She’s becoming more aware that her life is different to other children and is starting to feel self-conscious. She has cried a lot, questioning why this is happening to her. She has a lot of medical trauma and is having therapy with a child psychologist to try and help.

“We’ve been told to expect that Julia’s kidneys will fail within the next five years. You could become depressed thinking about the future, but we’re just trying to focus on what we need to do today. We all want to avoid dialysis and I’m keeping myself in the best possible health so that I can donate a kidney if I’m a match.

“There are developments happening in research that we’re hopeful could make a difference for Julia too. I don’t want to build my expectations too high, but it’s important to keep raising awareness and helping to fund research to push things forward.”

If you're looking for support, you can find help from https://bit.ly/3l38feJ

If you're a parent or carer visit our online forum Kidney Community, where you can share experiences, ask questions and get support. https://bit.ly/3LO5WNJ

11/02/2026

We spoke to Dr Wen Ding, from the University of Bristol, to celebrate International Day of Women and Girls in Science.

Wen’s research is looking at the potential of gene therapy in nephrotic syndrome, a condition which can lead to kidney failure in some children. Her research career began with a Kidney Research UK funded training fellowship.

Wen strongly believes that women belong in research and shares her advice to women starting their research career.

“I would say to women out there, you know more than you think."

09/02/2026

A new online space to share, listen and feel understood.

Today we've launched Kidney Community, a new dedicated online forum for kidney patients and carers – and you're invited to join.

We've developed Kidney Community, to help people connect with others who might be going through similar experiences. It’s designed to be a safe space where patients and carers can ask questions, have conversations, use our resources and, we hope, develop friendships over time.

Kidney Community is supported by Kidney Research UK’s expert team, helping to ensure conversations are informed, respectful and grounded in trusted information. It has been co-developed with kidney patients and carers to ensure it reflects real needs, concerns and priorities.

We have a team of moderators at the ready, and clear user guidelines to help everyone discover the strength of shared experiences in a supportive environment.

Maybe you’ll use it to find out how people have got on with different treatments, discover tips that will help with the practical and emotional reality of living with kidney disease, or simply take the opportunity to let off some steam among people who will understand where you're coming from.

Join Kidney Community and connect with people who know what living with kidney disease is really like.

Click to join today! https://bit.ly/3LO5WNJ

Kidney Community is our online forum, providing a safe space for people to share their experiences and find information and support.

08/02/2026

Doctors were unsure if Hattie would survive after she was born with renal dysplasia, a condition which meant her kidneys had not fully developed during pregnancy.

Now 29, Hattie has shared her story to raise awareness of kidney disease in the media and with over 30,000 followers on her social media channels.

She says: “My parents were told to say their goodbyes – but I survived! I was super unwell for the first two and a half years of my life. Then I received a life-saving kidney transplant.

“Unfortunately, my first transplant failed while I was at university in 2019. I needed dialysis for two and a half years, three times a week, for three hours every session. During that time, I had two mini-strokes because of high blood pressure and had four cancelled transplant dates.

“Finally, 22 years to the day after my first transplant, I received a new kidney from my dad. Grateful doesn’t even cut it. It has given me a whole new lease of life. I’m not so exhausted all the time, I have a full-time job, and I can go different places again. I wouldn’t be here if it wasn’t for my two organ donors and the NHS.

“I want people experiencing chronic illness to know that they’re not on their own. There are others going through the same thing – like me. We’re in this together.”

Thank you Hattie St Iff for sharing your story.

NHS Organ Donation NKF - National Kidney Federation

06/02/2026

World Kidney Day 2026 is on 12 March and Don’t Kid Yourself is back!

As the Kidney Charities Together Group, World Kidney Day, UK Kidney Association, Polycystic Kidney Disease (PKD) Charity UK, Kidney Research UK, Kidney Care UK, NKF - National Kidney Federation, Kidney Wales and Popham Kidney Support, we are all working together to bust myths about kidney disease and show why kidneys matter!

We need YOU to help challenge misconceptions, spark conversations and make kidney health impossible to ignore.

Watch our socials to see how to get involved. This is the year we change the narrative.

05/02/2026

It's Time to Talk Day, a reminder of how important it is to listen, share and talk about what really matters.

We’re sharing Hema’s story, a nurse who has spent more than two years on dialysis while waiting for a kidney transplant that could transform her life. She’s speaking out about the impact kidney disease can have on mental health as well as physical health.

Hema lives with epilepsy, and a routine blood test in 2022 revealed her kidney function had fallen to 60%. By summer the following year, it had dropped below 10%, leaving her no choice but to start dialysis.

“Dialysis has taken its toll, and I can’t remember what it feels like to be healthy. I don’t recognise myself anymore. The longer it goes on, the more I wonder when a transplant will happen for me.

“I’ve needed therapy to support my mental health but ongoing research and stories of people who have received transplants gives me hope for what my future could be.

Hema says dialysis affects her ability to socialise, spend time with family and has prevented her from starting a family with her husband, leaving her angry, upset and feeling lonely.

“I’m just thankful that choosing peritoneal dialysis has enabled me to continue working full time. That is one thing that is giving me purpose. I feel so grateful for the support I’ve had. My colleagues really care and go above and beyond.”

Hema is one of around 7,000 people in the UK waiting for a kidney transplant. She’s passionate about raising awareness of kidney donation and is hopeful about how a transplant could change her life in the future.

Read Hema's full story and find out more about available mental health support. https://bit.ly/4ccR8Tj

04/02/2026

For World Cancer Day, we are shining a spotlight on Dr Simon Baker and the team at the University of York, on their research into BK virus.

BK virus is a common virus that nearly everyone picks up in childhood generally without noticing. Once you have been infected with BK virus, it can hide in the kidneys without causing obvious symptoms.

Reactivation of BK virus can happen in kidney transplant recipients due to their immunosuppressive medication, and can affect the kidneys, ureter, and bladder.

We know that kidney transplant recipients develop ureter and bladder cancers much more frequently than the general population, so Simon and team are hoping their research can find new treatments that will control the virus and reduce the risk of bladder cancer.

Read more on Simon's work here: https://bit.ly/4pjXEvr

03/02/2026

Should organs ever be for sale?

Last week, The Guardian ran a comment piece arguing that the UK should consider legalising the sale of kidneys.

We would be the first to say that organ shortage costs lives, but the article overlooked some crucial issues - including inequality, the importance of prevention, and the continued willingness of people in the UK to donate altruistically when properly supported.

Our chief executive, Sandra Currie OBE, has written a response, setting out why monetising human organs isn’t the answer - and why investment in prevention, fair access to transplantation, and ethical donation matters.

Read our full response in the images.

For more information about organ donation, visit Donate a Kidney UK

01/02/2026

You’ve been told you have end stage kidney disease, but what does that mean?

End stage kidney disease is also known as ‘stage 5 chronic kidney disease (CKD)’.

When your kidneys fail, it is life-threatening, and without treatment, it can be fatal. Most people with stage 5 CKD require dialysis or a kidney transplant.

Below are the stages of chronic kidney disease:
• Stage 2
• Stage 3a
• Stage 3b
• Stage 4
• Stage 5

For more information on each stage, click here: https://bit.ly/3vA6F8N

30/01/2026

Poppy Lowens was nine years old when she was left in a huge amount of pain by what seemed to be a stomach bug. Within a few days, she had developed a rash and began to vomit, prompting her mum to take her to hospital.

Poppy says: “My rash didn’t disappear under pressure and there were fears that I had meningitis. Doctors suspected this was the case, but it turned out to be IgA vasculitis which was trigged by Group A streptococcal infections.

“Usually, IgA vasculitis goes away on its own or with the aid of antibiotics, but I had reoccurrences which lasted a year. At the time I didn’t understand how severe it was, and my parents tried to play it down so that I wasn’t as scared. I missed a lot of school but thankfully I had supportive friends and was able to catch up on my learning.

“The most frightening part was that, on one occasion, I lost my eyesight for several hours. That was terrifying, and I also had to deal with symptoms of arthritis and being sick because of gastrointestinal issues.

“Even now, I still have some long-lasting effects. My immune system is suppressed and I have reduced kidney function. That means I get poorly more easily and find it more difficult to fight off illnesses. I also still have some arthritis.”

A decade later, Poppy’s experiences have motivated her to pursue a degree in biomedical sciences and has reconnected with her childhood renal consultant, Dr Louise Oni.

Poppy is supporting Dr Oni's research project, funded by Lifearc and Kidney Research UK, looking at the causes of immunoglobulin A (IgA) vasculitis - the same condition that hospitalised her.

Click to read Poppy's full story and find out more about the LifeArc–Kidney Research UK Centre for Rare Kidney Diseases. https://bit.ly/3Z8JRfG

29/01/2026

Could understanding blood pressure changes during sleep in kidney patients be key to protecting heart and vessel health?

Dr Jess Ivy, and the team at the University of Edinburgh, have shown that studying changes in small blood vessels in the kidney in models during sleep could improve our understanding of heart and vessel health in kidney disease patients.

Their research could lead to new ways of protecting the vessel health of kidney patients in the future and form a new approach to improving cardiovascular health.

Read more about the project: https://bit.ly/3NSs6Pe

Dr Jess Ivy has shown that studying changes in blood vessels in the kidney could improve our understanding of heart and vessel health.

27/01/2026

Now in its 12th year, The Purple Ball is returning on Valentines Day to continue its mission on raising awareness and vital funds to support those living with kidney disease.

Gary and his partner, Andrew, set up the Purple Ball in memory of Gary’s mother, Maggie, who sadly passed away from amyloidosis, a rare condition where protein builds up in your body and can affect different vital organs, including your kidneys.

The disease not only affected Maggie, but also claimed the lives of Gary's aunt, uncle, and his grandfather.

Gary shares Maggie’s story with us and why she is the inspiration behind the success of the Purple Ball:

“My mum, Maggie, was always a grafter and after the tragic death of her husband, worked five jobs a day to ensure her kids didn’t go without. She was always happy at her work and latterly worked at Glasgow University, Govan Youth Information, and Govan High School.

“In 2001, Maggie suffered renal failure and was diagnosed with familial amyloidosis, a rare genetic disorder. As a hereditary disease, it had already claimed the life of her brother George and her sister Pauline, in fact this illness had been impacting the family for generations.

"For over nine years she was a patient at the Western Infirmary, Gartnavel General and later the New Victoria Hospital where she made friends with other patients, nurses and consultants.

“Maggie understood that there was a 50/50 chance that one day this disease could affect her children, and the children of her siblings, and wanted to make sure that her pain and suffering was not in vain. In doing so, Maggie regularly participated in research studies in London to help gain a better understanding of this disease and maybe one day find a cure.

“In 2011, she agreed to participate in pioneering surgery which would provide both a liver and kidney transplant in a bid to eradicate the illness. Unfortunately, Maggie suffered a heart attack prior to the pre-op deeming her unsuitable for surgery.

“In the weeks and months following, she suffered a stroke and latterly contracted vascular disease affecting both her legs. On July 4, 2012, the family were told that there was nothing more that could be done for her, and arrangements were to be made for palliative care. Later that day Mum passed away at the Western Infirmary surrounded by her family and close friends.”

Gary, supported by family and close friends, is the driving force to make this ball happen.

Around 600,000 people in Scotland have chronic kidney disease, that’s why events like The Purple Ball are so important. They raise funds for vital research to improve diagnosis, develop new treatments, and one day find cures for conditions like familial amyloidosis.

For more information, click here: https://bit.ly/42rmNM1