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Spring 2019 Issue 18

THE MAGAZINE FROM KIDNEY RESEARCH UK

TINA TURNER’S TRANSPLANT LOVE STORY PAGE 04

Gene editing to halt kidney disease PAGE 08

Leading the way in treating children with nephrotic syndrome PAGE 10

Young kidney dialysis patient showcases expert origami skills PAGE 14


Welcome Welcome to the spring issue of Update magazine. As this is the first Update of 2019 we have dedicated the first two pages of the magazine to celebrating the incredible commitment of our supporters throughout 2018. The enthusiasm and hard work of so many people who have rolled up their sleeves to help us is remarkable. Thank you. When you turn to page 10 you will read about Rosie Butler and the incredible renal team at Bristol Royal Children’s Hospital. Born with a genetic condition which led to kidney failure, Rosie’s treatment is being coordinated by Professor Moin Saleem, a researcher funded by Kidney Research UK. Although she may not know it yet, Rosie is helping researchers understand more about rare conditions such as hers and as her treatment progresses, so too does their knowledge. This issue also features the incredible rock icon Tina Turner. I have always been a fan of Tina and her music – reading about her battle with kidney failure and her transplant journey really brings home the indiscriminate nature of kidney disease. This is why we must aim to increase the funding available for research to improve the outcomes for everyone. Earlier this year I attended some exciting meetings which I hope will lead to some increased funding for our work. We know that research we have funded is currently reaching a critical stage. There are teams now poised to take significant steps forward in our understanding of kidney disease, but they need more investment.

to everyone who raised money for us in 2018 People fundraise for Kidney Research UK for all sorts of reasons, and each and every penny raised helps us to fund more life-saving research.

W

hat we can’t help admire is the range of exciting and original ways supporters fundraise.

From crafting, to quiz nights to good old fashioned bake sales, there seems no end to the imaginative ways people raise money within their communities. One of our favourite fundraising events of 2018 was organised by twins Rob and Daniel Biddulph from Stoke on Trent, who held

When supporters like you give your time, energy and passion to Kidney Research UK great things can happen. Together we can improve people’s lives, both now and in the future. Thank you for being part of it.

Editor Maria Thompson Contributor Allison Parkinson Designed by www.adeptdesign.co.uk

Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ Tel: 0300 303 1100 pressoffice@kidneyresearchuk.org www.kidneyresearchuk.org

Charity registration numbers: 252892 (England and Wales) SC 039245 (Scotland)

Find out more: www.kidneyresearchuk.org

The quiz night was brilliant and the money raised is a fabulous achievement. I chose Kidney Research UK because I wanted to give something back and I know the money will help the charity to continue their research. Daniel Biddulph Together, Rob and Daniel raised an amazing £2,867.

Daniel and Rob Biddulph

Sandra Currie, Chief Executive

a quiz night. Daniel has had kidney disease for most of his life and his kidney function is now only working at 11 per cent. Rob offered to donate a kidney to his brother last year and the pair are now being prepared for their operations. In the meantime they decided to have some fun raising money for us.

Diary dates 2019 The Big Half

March 10

London

World Kidney Day

March 14

Do your own fundraising

Run 13 miles

London Marathon

April 28

London

Run 26.2 miles

Course Havoc

May 19

Peterborough

5K obstacle run

London Bridges Walk

June 30

London

Walk 7 miles

Newcastle Bridges Walk

July 14

Newcastle

Walk 7 miles

Ride London 100

August 04

London

Cycle 100 miles

Glasgow Bridges Walk

September 1

Glasgow

Walk 7 miles

Great North Run

September 8

Newcastle

Run 13.1 miles


FUNDRAISING // P03

Liam Cronin recently swam the length of Lake Coniston – an astonishing 5.25 miles – to raise over £1,340 for us. His motivation? Kidney disease impacting his family. He said: “When I was in primary school my dad had to have a kidney transplant, due to polycystic kidney disease. My brother has been diagnosed with the same disease and it has impacted other members of my family too.”

Last autumn Mark Camidge, together with friends Andy and Craig, took on the challenge of white water rafting down the Zambezi river. Mark wanted to give something back because his wife Rachael, who had been ill for about 14 years, had her life saved when she got her kidney transplant.

Describing his achievement as the hardest thing he’s ever done over the longest four hours of his life, Liam swam in a water temperature of 16.8°C suffering cramp at about the 3 ½ mile mark.

I DID IT. The 5.25 mile Coniston Water swim, breaststroke, in 4 hours 36 minutes and 30 seconds. Totally worth it, £1,340 raised for an incredible charity. Liam Cronin

The amazing Zambezi River team

Rachael’s treatment and transplant would not have been possible without amazing NHS staff, the donor register and Kidney Research UK. We wanted to raise awareness of kidney disease and the amazing work that Kidney Research UK does for those who suffer from this incurable illness.

Michelle Holmes held a festive bake stall

Francoise Jellis makes and sells greetings cards for us. She chooses to do this because her 16-month old grandson has a rare kidney condition requiring him to be in hospital three times a week for infusions.

My little grandson is well looked after by the NHS staff. He spends a lot of time in hospital, but he is slowly growing and has come a long way from when he was diagnosed at just five weeks old. There’s still a long way to go until he can have a kidney transplant, but I hope each year gets us closer to finding ways of dealing with chronic kidney conditions. In less than a year, Francoise has raised £1,000. Michelle Holmes, whose son has kidney problems, held a festive bake sale with her colleagues from West College in Scotland. They raised £186 which is, as Jenny puts it, ‘a small contribution for a big cause’.

Kidney Research UK would like to thank each and everyone of you who has raised The Zambezi ‘18 team raised a staggering £11,275. money for us – you are amazing. Mark Camidge

If you would like to get involved this year and need help deciding how to do it, our fundraising packs provide all sorts of ideas as well as helping you with practical advice, such as setting up your own fundraising page and banking the funds raised. The Kidney Research UK community team are looking forward to hearing from you and supporting you with your activity. Contact them on 0300 303 1100 or check out our resources here: www.kidneyresearchuk.org/get-involved/fundraising

To make a gift to Kidney Research UK call: 0300 303 1100


TINA TURNER’S STORY // P04

Tina Turner’s transplant love story Rock and roll legend and inspirational music icon, Tina Turner surprised many last year when she revealed she was in recovery from a kidney transplant. Her story demonstrates the indiscriminate nature of kidney disease.

D

etails of her illness, dialysis treatment and eventual transplant, form the closing narrative to her autobiography, ‘My Love Story’. In the final chapters of this fascinating book Tina’s health struggles, which began when she suffered a stroke, are laid bare. A kidney from her second husband Erwin Bach not only saved Tina’s life but restored her belief in humanity following an abusive 14-year marriage to Ike Turner. In the book we learn how it was her hospitalisation for a stroke which led to the discovery of a declining kidney function. She candidly admits she knew very little about kidney disease, which ultimately led to her making quite poor health decisions. Tina writes: “I tried to understand my kidney’s purpose, and why it was important. Something, to be honest, I’d never thought about before.”

Good came out of bad. Joy came out of pain. And I have never been so completely happy as I am today.

Find out more: www.kidneyresearchuk.org


TINA TURNER’S STORY // P05

The sensation was so strong that it persisted hours after the treatment, the way the body sometimes feels the rhythmic pull of waves when swimming in the ocean. Tina having dialysis treatment. Picture from Tina’s private collection

Tina later chose to stop taking her blood pressure medication, replacing it with homeopathy, a decision which she would later regret. “The consequences of my ignorance ended up being a matter of life or death,” she said. “If I hadn’t discontinued the medication, if, if, if. A small decision but one that would continue to haunt me.” Further on her description of dialysis, which she received for nine months, really gives the reader a sense of how uncomfortable and invasive the treatment can be – she jokingly refers to her haemodialysis machine as R2D2 from Star Wars.

“The most distinctive detail about the (hospital) room was the whooshing sounds of the machines. I experienced the same whooshing feeling inside too, as the fluids travelled through my body during dialysis. The sensation was so strong that it persisted hours after the treatment, the way the body sometimes feels the rhythmic pull of waves when swimming in the ocean.”

Joy came out of pain. And I have never been so completely happy as I am today.” In the closing chapter readers are encouraged to sign the organ donor register and save lives – something we couldn’t have put better ourselves. To buy a copy of this book you can visit www.kidneyresearchuk.org and follow the link.

Tina goes on to write about how her husband Erwin, who she has been with for three decades, shocked her by saying that he wanted to give her one of his kidneys. “I wondered if anyone would think that Erwin’s living donation was transactional in some way,” she said. “Incredibly, considering how long we had been together, there were still people who wanted to believe that Erwin married me for my money and fame. What else would a younger man want with an older woman? Erwin always ignored the rumours.” The April 2017 operation was in many ways a success, with Tina performing briefly in London for the opening of a musical about her life, just six months later. “I know that my medical adventure is far from over,” she writes. “But I’m still here – we’re still here, closer than we ever imagined. I can look back and understand why my karma was the way it was. Good came out of bad.

Kidney Research UK does not receive any portion of the profits from Tina’s book and Tina is not affiliated with the charity.

One of the bestselling artists of all time, Tina Turner has sold 200 million records, won 11 Grammy awards and has set the stage on fire with every rock luminary from Mick Jagger to Beyoncé. Her live shows have been seen by millions, with more concert tickets sold than any other solo performer in music history. Tina and Erwin on their wedding day. Picture from Tina’s private collection

To make a gift to Kidney Research UK call: 0300 303 1100


KIDNEY GENES // P06

GENES linked to chronic kidney disease risk revealed

An international study led by University of Manchester scientists, has discovered the identity of 35 genes that predispose people to chronic kidney disease (CKD).

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acked by funding from Kidney Research UK, the team’s discovery is a major advance in the understanding of the significantly under-diagnosed condition which, if left undetected, can lead to people needing dialysis or kidney transplantation to stay alive.

Find out more: www.kidneyresearchuk.org

The discovery of 35 kidney genes is an important step forward to the future development of new diagnostic tests and treatments for the disease that affects around one in ten adults. Lead researcher Professor Maciej Tomaszewski from The University of Manchester, said: “Chronic kidney disease is known for its strong genetic component. “Our limited knowledge of its exact genetic mechanisms partly explains why progress in the development of new diagnostic tests and treatments of chronic kidney disease has been so slow.

We hope that some of the kidney genes we discovered may become attractive targets for the development of future diagnostics and treatment for patients with chronic kidney disease.


KIDNEY GENES // P07

The findings were made possible by using a state-of-the-art technology known as ‘next-generation

RNA sequencing’, applied to one of the largest ever collections of human kidneys.

Co-author Professor Adrian Woolf

“The findings were made possible by using a state-of-the art technology known as ‘next-generation RNA sequencing’, applied to one of the largest ever collections of human kidneys.

“It makes a sticky protein called mucin that coats urinary tubes inside the kidney. Mutations of this gene have already been found in families with rare diseases, who have inherited kidney failure."

“We hope that some of the kidney genes we discovered may become attractive targets for the development of future diagnostics and treatment for patients with chronic kidney disease.”

Professor Fadi Charchar from Federation University in Victoria, Australia, said: “We hope that early prediction by genetic testing even before the development of symptoms will in the future be the first line of defence against one of the world’s top killers.

Co-author Professor Adrian Woolf from Manchester Children's Hospital and The University of Manchester, said: "One of the genes – mucin-1– is especially interesting.

“Early detection followed by treatment using kidney-protective medication or avoidance of drugs which can damage the kidneys is the key to healthier kidneys later in life.”

Elaine Davies, director of research operations at Kidney Research UK, said: “Nearly two million people in the UK have been diagnosed with moderate-severe CKD by their GP but it is estimated that a further one million people remain undiagnosed. We refer to CKD as a silent killer because it is common for it to have little or no symptoms until the consequences of the disease have taken hold. The findings of this research are hugely important as they bring us a step closer to being able to understand, diagnose earlier and prevent kidney disease.” The team, based in Poland, Australia and the UK had their study published in Nature Communications in November 2018.

To make a gift to Kidney Research UK call: 0300 303 1100


RESEARCH ROUND UP // P08

Gene editing to halt kidney disease:

A research breakthrough For the first time scientists have identified how to halt kidney disease in a life-limiting genetic condition, which may pave the way for personalised treatment in the future.

E

xperts at Newcastle University have shown in a cell model and in a mouse model that gene editing could be used to stop kidney damage in patients with Joubert syndrome who have a specific faulty gene. Joubert syndrome is a brain disorder, causing varying degrees of physical, mental and sometimes visual impairments. The condition affects approximately one in 80,000 newborns, and one third also get kidney failure.

He said: “This is the first time that gene editing within the kidney has been performed, even in a mouse model, as the design and delivery of the gene editing to the kidney has previously been thought to be too difficult. “Our research is a major step forward as we now know how we may be able to offer a therapy that corrects the gene mistake within kidney cells and prevent the development of genetic kidney disease.

Not all patients with Joubert syndrome carry the faulty CEP290 gene, but those who do will develop kidney disease during their lifetime and may require a transplant or dialysis.

Significant breakthrough Professor John Sayer

The research, funded by Kidney Research UK, has found it is possible to use a strand of engineered DNA to trick the cells’ own editing machinery to bypass the CEP290 mutation that causes kidney damage – a technique known as ‘exon-skipping’. Professor John Sayer, from the Institute of Genetic Medicine, Newcastle University, led the research that has been published in the Proceedings of the National Academy of Sciences (PNAS).

Find out more: www.kidneyresearchuk.org

“This work paves the way towards personalised genetic therapies in patients with the inherited kidney disease.” The European study used kidney cells from patients with Joubert syndrome and a mouse model to progress the research. Experts used urine samples to grow kidney cells in the laboratory to see how the cells responded to gene editing. They also performed gene editing to halt kidney disease in a mouse that had Joubert syndrome and in rodents suffering from kidney cysts and kidney failure.

Our research is a major step forward as we now know how we may be able to offer a therapy that corrects the gene mistake within kidney cells and prevent the development of genetic kidney disease.


RESEARCH ROUND UP // P09

Asher’s story

Teenager Asher Ahmed has Joubert syndrome and is likely to need a kidney transplant in the future. Asher, of Fenham, Newcastle, was diagnosed with kidney damage five years ago and is on a number of drugs to keep him well.

The 19-year-old has a range of medical issues due to his Joubert syndrome, including visual impairment, communication problems and difficulties with balance and coordination

This will mean that we can edit out genetic mistakes that are leading to inherited kidney diseases such as Joubert syndrome and we are testing this technology in other mouse models before we move into patient studies.

The teenager has been instrumental in helping further the research as he has provided many samples over the years, allowing the Newcastle scientists to grow kidney cells – without these the research would not have been possible. Asher’s mother, Nabila, says she welcomes the findings of the Newcastle University-led study as it will help give patients a better quality of life in the future. The 50-year-old said: “It is very important that research is done into Joubert syndrome and the linked kidney damage as this will hopefully prevent patients in the future needing a kidney transplant. “All throughout Asher’s life, he has lived with the effects of Joubert syndrome and five years ago he was diagnosed with kidney disease as he has the CEP290 gene. “Asher is on a number of tablets to keep him well and this is an added complication to an already difficult condition. We know he will likely need a transplant in the future and this is a worry.

Challenging disease

Professor Sayer said: “The treatment of genetic kidney disease is challenging, as this requires both the correction of the underlying gene defect and the delivery of the treatment.

“We were happy for Asher to provide samples for the study as anything that helps further understanding into the condition is well worth doing, so it’s great to see the study’s positive results.”

All throughout Asher’s life, he has lived with the effects of Joubert syndrome and five years ago he was diagnosed with kidney disease as he has the CEP290 gene.

“We have shown that the kidney disease in a mouse can be dramatically improved using this exon-skipping gene editing technology. “This will mean that we can edit out genetic mistakes that are leading to inherited kidney diseases such as Joubert syndrome and we are testing this technology in other mouse models before we move into patient studies.

Nabila and Asher Ahmed

“We expect that we will start to test treatment of patients with exon-skipping within the next three years.” Scientists are now looking to work with a drug manufacturing company to bring the exon-skipping technology into patient clinics.

To make a gift to Kidney Research UK call: 0300 303 1100


NEPHROTIC SYNDROME // P10

Research in action: Leading the way in treating children with nephrotic syndrome

Research is vital to improving the lives of kidney patients at every stage of their treatment. But it can take a frustratingly long time for these findings to be interpreted into daily care. For some patients however, this is not the case and they are able to inform and benefit from research as it happens.

I naively said when they told us: ‘at least it’s only her kidneys,’ not realising the impact it would have on her body.

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t Bristol Royal Children’s Hospital researchers and renal specialists work together to deliver the very best outcomes for the young children under their care. Rosie Butler is one such patient. Rosie was born with congenital nephrotic syndrome – her parents received the devastating diagnosis when their baby was just five days old. Mum Hannah said: “I naively said when they told us: ‘at least it’s only her kidneys,’ not realising the impact it would have on her body.” Despite having no experience of renal disease Hannah knew something wasn’t right from the day Rosie was born. “It was very clear to me that something was seriously wrong because Rosie wasn’t urinating yet she was gaining weight. On the second night of returning home from the maternity unit she slept straight through until the next morning – I just knew it wasn’t right.

Photo: Dee Robertson Photography

Find out more: www.kidneyresearchuk.org

“When I spoke to the community midwife she was fantastic and urged us to get Rosie back to our local hospital maternity unit. I had to go back in for surgery for birth complications and they reassessed Rosie too.” Once Rosie’s condition had been diagnosed there were many failed attempts to set her up with dialysis access. This added complication became the catalyst for many problems that followed. Rosie Butler and her mum Hannah


NEPHROTIC SYNDROME // P11 Due to the failure of her peritoneal dialysis line Rosie was then fitted with a vascular catheter to enable doctors to take over the job her kidneys were failing to do. In the special intensive care unit for babies she received haemofiltration, which is like haemodialysis but takes place over a 24-hour period, making it more gentle on a young child’s body. Five months later and Rosie was still in hospital. Attempts to establish her on peritoneal dialysis so she could return home with her family, had been unsuccessful. Fortunately, Rosie was in the best possible place. Bristol Children’s Hospital is opposite one of the country’s best kidney and genetic research laboratories and leading the flagship team of doctors in her care, was Professor Moin Saleem. Professor Saleem is a Kidney Research UK supported researcher in pediatric nephrology, who has a particular interest in nephrotic syndrome. His research and that of other leading nephrologists is uncovering some of the mysteries surrounding this particular type of kidney disease, paving the way for better treatments and improved understanding. Through nephrotic syndrome genetic testing developed at Bristol, Professor Saleem was able to make a rapid diagnosis for Rosie and her family. He said: “This is something that would not have been possible at all a few years ago.” Research into the genes involved in kidney disease is still in the very early stages, compared to other disease areas. And there are over 50 different genes that can cause nephrotic syndrome. A recently created Gene Panel Test meant Professor Saleem could pinpoint the WT1 mutation causing Rosie’s condition, enabling him to treat the condition more effectively. Professor Saleem added: “The diagnosis allowed us to direct Rosie’s clinical care. For example, we knew we should remove her kidneys because of the specific genetic mutation she had. “It has also allowed us to make an outlook prognosis for when she has a transplant – so we can determine, for example, whether she would have a recurrence.” At 10 weeks of age Rosie’s kidneys were completely removed in an operation called a bilateral nephrectomy.

Dan Speakman at Bristol Royal Children’s Hospital renal unit

Hannah said: “It was a relief when Rosie’s kidneys were taken out because her blood pressure had been sky-high and her kidneys were the source of the problem. But, saying that, it felt very final – even though they had never worked. “After that Rosie had a line fitted so she could have dialysis at home and in November 2017 we took her home. It felt amazing. She was on peritoneal dialysis (PD) and had a nasogastric tube fitted to keep her nourished. Our biggest problem was her constant vomiting. “Sadly, on Christmas day she became seriously ill when she developed a line sepsis and we were blue-lighted straight back to hospital.” Hannah, Rosie’s three-year-old brother Henry and dad Luke spent most of 2018 at the Bristol Royal Children’s Hospital renal unit, a 112 mile drive from their home in Devon. Hannah said: “At 13 months Rosie’s PD catheter had to be removed because of fungal peritonitis, so she had haemodialysis, meaning Rosie, Henry and I travelled to Bristol almost every day – for months on end. We got up at about 4am for each visit, drove the two-hour journey and then drove back again some four or five hours later, making our days 10-12 hours at a time.

In the meantime Hannah and the fantastic team at Bristol are working hard to keep Rosie well and nourished so she can grow to a size that will make a transplant operation possible. Professor Saleem and his team have kept Rosie’s kidneys for research purposes. This will enable them to pinpoint the most effective treatments for Rosie in the future, as well as improving their overall understanding of nephrotic syndrome. Genetic research is a fast-moving and exciting area of science which allows clinicians to understand the biology of a disease in ways that have not before been possible. It is also bringing us closer to understanding kidney disease and a more personalised way of treating it. Research funded by you is already improving the lives of patients like Rosie, but there is still so much more we need to do. Kidney Research UK supports the very best researchers in their area of expertise and will continue to do so until lives are free from kidney disease.

“Now Luke is back at work and Rosie is now back home with her fourth PD catheter.”

It was a relief when Rosie’s kidneys were taken out because her blood pressure had been sky-high and her kidneys were the source of the problem. But, saying that, it felt very final – even though they had never worked. To make a gift to Kidney Research UK call: 0300 303 1100


KIDNEY HEALTH // P12

When kidneys

go wrong If you’re affected by kidney disease, it can be difficult to explain your condition to others. Some people aren’t aware of just how vital our kidneys are, or what happens in the body when they go wrong. We hope this whistlestop guide might help – feel free to share it with your family and friends.

O

ur kidneys are highly complex organs that control our blood chemistry, blood pressure, and the amount of fluid in our bodies. They also keep our blood clean and chemically balanced.

Where kidneys go wrong

Acting as very efficient and specialised filters, they work to rid our bodies of waste and toxic substances and return vitamins, amino acids, glucose, and other vital substances into our bloodstream. They also produce chemical messengers (hormones) which flow to other parts of the body to control functions including blood pressure, bone health, and production of red blood cells.

x the blood supply to the kidneys

Around one quarter of all the blood flow leaving the heart goes to the kidneys. The blood is then channelled to about a million tiny filters in each kidney. The filters are called glomeruli. These are joined onto small tubes (tubules) to form nephrons (the structural and functional units of the kidney). Each day around 180 litres of this filtered blood (known as filtrate) pass into the nephrons. Nearly all of the liquid is then reabsorbed back into the bloodstream: between one and one-and-a-half litres is sent out of the body as urine. This vital process ensures that the body functions efficiently. But when our kidneys are not working properly, harmful toxins and excess fluids can build up in our bodies and normal hormone production can be disrupted.

Find out more: www.kidneyresearchuk.org

Super filters that clean your blood

Dirty blood in

Normal kidney processes can go wrong in several areas including: x w  ithin the kidneys – especially the filters and tubules x w  here urine flows from the tubules into the bladder. If your kidney damage is more likely to be permanent and possibly progressive it is known as chronic kidney disease (CKD) – where ‘chronic’ means ‘longerlasting’, rather than ‘severe’. The condition is broken down into various stages, depending on the level of kidney damage and the percentage of kidney function left.

Waste leaves the body

1 in10

of us in the UK may have chronic kidney disease

1 in10

of those affected by CKD will develop kidney failure requiring dialysis or a kidney transplant in order to stay alive

Clean blood out


KIDNEY HEALTH // P13

Kidney disease is varied and complex, with many types of conditions, treatments and degrees of illness. These range from temporary, minor ailments to those that are life-threatening. Consultant nephrologist and Kidney Research UK Trustee Dr Charles Tomson.

How kidney disease can affect the body Kidney disease can affect the body in a number of different ways:

Kidney damage and high blood pressure The kidneys help to regulate blood pressure by controlling the amount of fluid in the circulation and by sending hormones that control constriction of blood vessels. Many forms of kidney damage can cause high blood pressure. High blood pressure can also contribute to progressive kidney damage, so this can be a ‘vicious cycle’.

Anaemia Erythropoietin (another hormone secreted by the kidney) usually acts on the bone marrow to increase the production of red blood cells by the bone marrow. If kidney function diminishes, insufficient hormone is produced and the number of red blood cells being produced will fall, resulting in anaemia – a low blood count.

Bone and muscle weakness Healthy kidneys ‘activate’ vitamin D (which we get from some food and from sunlight). The active form of vitamin D is needed to maintain normal bone structure and effective muscle function. Advanced kidney disease reduces the amount of activated vitamin D in the system. This can cause bone disease, increasing the risk of fractures and bone pain; and can sometimes cause muscle weakness.

People with kidney disease are more prone to have high blood pressure and potential problems with circulation, so it’s always a good idea to have regular health checks so that people can be offered lifestyle advice and treatment to protect the kidneys from future damage and to reduce the risk of stroke and heart attack. “Kidney disease is varied and complex, with many types of conditions, treatments and degrees of illness. These range from temporary, minor ailments to those that are life-threatening,” says consultant nephrologist and Kidney Research UK Trustee Dr Charles Tomson.

We are working to deepen our understanding of exactly why, where and how kidneys go wrong so that we can find new and better ways to prevent kidney disease happening, restore normal kidney function, and provide treatments to keep people well when the kidney damage can’t be repaired. Dr Charles Tomson For further information about kidney disease, visit our health information pages at www.kidneyresearchuk.org

To make a gift to Kidney Research UK call: 0300 303 1100


FOCUS ON... // P14

Young kidney dialysis patient uses ward time to polish expert origami skills A young renal outpatient at Bradford Teaching Hospitals has used the time he’s spent receiving treatment to become an expert in the Japanese art of origami.

Find out more: www.kidneyresearchuk.org


FOCUS ON... // P15

A

aqif Khan, 23, now sells some of the stunning paper creations he makes while receiving kidney dialysis three times a week at St Luke’s Hospital’s Renal Dialysis Unit in Bradford.

The former college student has spent a significant amount of time in hospital throughout his young life while battling the rare congenital nephrotic syndrome, which often leads to acute kidney failure. But he has found comfort, a hobby and now a fledgling business in the ancient art of paper folding. He said: “I had my first kidney transplant aged four in Leeds, which failed, and then a second aged eight, from my Dad, which was successful. “It lasted for 15 years but then started to fail in March this year. I came back into hospital to have an AV graft fitted and have been having dialysis again since April. This summer, I also went back on the kidney transplant register.” Aaqif first learnt the art of origami aged eight while recovering from his second kidney transplant. He has since gone on to master the complex skill of 3D origami, which sees practitioners use hundreds of sheets of paper to create striking sculptures without using a single drop of glue. This branch of origami is made using multiple triangular units which are connected together to form a single design. Each triangle is made from a rectangular sheet of paper, and multiple colours and patterns are used to create more life-like models.

Aaqif has become so adept at the ancient artform that he has also set up his own business selling the models. Paper parrots, frogs and penguins have all recently emerged from his fingertips, as well as models of fictional Hollywood heroes and heroines. But his main aim is to find a new kidney and then pass on his folding skills to children from throughout the district. “If anyone out there is willing to donate a kidney, we all really need one,” he added. “If you get a kidney you can do so much more with your life. It’s not ideal if you are stuck to a dialysis machine three times a week as after you’ve been to dialysis most of your day is gone. “But what I really want to do is teach young people and people in similar situations to me how to do origami. I’d love to teach children from youth centres and after-school clubs. “I really like origami because it’s really creative and keeps your mind off things. It’s great to be able to create 3D models from flat pieces of paper.” Aaqif often practises his skills while receiving dialysis at the unit, and recently presented ward clerk Maureen Cain with a giant swan to say thank you for her support. She said: “I was absolutely blown away by it. I couldn’t believe how clever it was. He is very talented and we are so proud of him!”

If you get a kidney you can do so much more with your life. It’s not ideal if you are stuck to a dialysis machine three times a week as after you’ve been to dialysis most of your day is gone.

What is your creative outlet? If you are a kidney patient, we’d love to hear how you might distract yourself while on dialysis. How important is creativity to your overall health? Join in the conversation on our social media channels @Kidney_Research /kidneyresearchuk @kidney_research_uk Kidney Research UK

But what I really want to do is teach young people and people in similar situations to me how to do origami. I’d love to teach children from youth centres and after-school clubs.

To make a gift to Kidney Research UK call: 0300 303 1100


e th in r, e h e k li rs e th o d n a . e s a e is d y e n id k t s in a g a t h g fi From baking to bingo‌whatever you love, turn your passions into pounds to fund life-saving research. After losing a friend to kidney disease, and then being diagnosed myself, I wanted to do more to join the fight against kidney disease. Jeanette, Kidney Research UK supporter

Jeanette and her friends at Inner Wheel have already raised ÂŁ9,000, and are hoping to reach ÂŁ10,000 for their four-year anniversary of fundraising in the spring.

Sign up

to get your fundraising pack www.kidneyresearchuk.org/get-involved/fundraising supportercare@kidneyresearchuk.org 0300 303 1100 Registered charity no. 252892 Registered Scottish charity no. SC039245

Profile for Kidney Research UK

Update Magazine Spring 2019 Issue 18  

Read about Tina Turner's transplant love story and the latest in kidney research.

Update Magazine Spring 2019 Issue 18  

Read about Tina Turner's transplant love story and the latest in kidney research.