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Spring 2018 Issue 15

THE MAGAZINE FROM KIDNEY RESEARCH UK

MEET ISABELLA AND OUR OTHER YOUNG HEROES PAGE 08

Dame Jacqueline Wilson talks about her kidney transplant

06

Diabetes study could have global significance

12

DJ Danny Howard and fundraising in memory of his father

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DONOR CARD

Kidney heroines to be recognised for World Kidney Day

Welcome! I was delighted to be asked to introduce this issue of Update, which celebrates a number of true Kidney Research UK heroines (and heroes). The focus on heroines is very appropriate given the theme – kidney disease and women’s health – of this year’s World Kidney Day on March 8. Kidney Research UK is an integral partner of the Kidney Charities Together group, who coordinate the UK campaign. This year they are working very closely with the Renal Association, for whom I’m proud to be leading events. Kidney disease affects people from all backgrounds, all ages and both genders. It impacts hugely not only on those with kidney disease, but also their families and friends. It can be very frightening and overwhelming. But as a result of work funded by Kidney Research UK, the outlook is improving. From understanding why certain groups might be predisposed to kidney disease (see Professor Paul Roderick’s studies on pages 12 and 13); to understanding why socioeconomically deprived people are less likely to receive a living donor transplant (Dr Pippa Bailey’s study on page 12 and 13); to improving the wellbeing of those on dialysis (see Dr Emma Watson’s work on page 14). The benefit of live donor transplantation (and the wonderful paired-pooled system of matching up live donor pairs whom, for one reason or another, are not suitable donors for their planned recipient), are eloquently described by charity ambassador, Dame Jacqueline Wilson, on page 6. But perhaps the most inspiring stories in this issue are those of the patients and their families who, despite dealing with kidney disease, give their time and effort to raise money, awareness and support. Kids Kidney Research has merged with Kidney Research UK and the stories of the amazing children are extraordinary. Through Kidney Research UK, everyone is focused on achieving the same end points: improving diagnosis, treatment and the lives of people with kidney disease. Celebrate with them – and donate.

Liz

Professor Liz Lightstone, Guest Editor pressoffice@kidneyresearchuk.org Liz Lightstone is Professor of Renal Medicine at Imperial College London.

Contributors Allison Parkinson Maria Thompson

Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ

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Tel: 0300 303 1100 www.kidneyresearchuk.org

Find out more: www.kidneyresearchuk.org

World Kidney Day takes place on March 8 this year, coinciding with International Women’s Day. Kidney Research UK is dedicating the day to kidney heroines in the UK.

Alison King on set as Carla Connor

Transplant issues raised on Coronation Street Kidney disease features in a major storyline in Coronation Street, which was first revealed over the New Year, and Kidney Research UK’s medical and patient contacts had a crucial role to play. Fans of the show will know that after 18 months away, Carla Connor (played by Alison King) returned at Christmas to help reopen the Underworld factory and spread some festive cheer among the dreary cobbles. The soap favourite was initially summoned to the Street by younger brother Aidan (Shane Ward) in the hope that she would save the failing factory business. But her life took a different turn when it was revealed she had kidney disease. Coronation Street producers asked Kidney Research UK for support on the medical content of the scripts, set and character detail. The charity worked with a transplant surgeon, a nephrologist and patient experts to provide the advice needed. Alison King, who plays Carla said: “I am very fortunate that the researchers at ITV have been working very closely with Kidney Research UK and have been able to advise me about how Carla would be feeling and how her health would be affected by what is going on. “Carla is in denial really, she knows

“With the media spotlight inevitably on women on this day, we are taking the opportunity to celebrate all the women who are part of the fight against kidney disease,” said Sandra Currie, Chief Executive of Kidney Research Kidney Research UK volunteer of 10 UK. “Mothers who care for family years, Violet Hasdell gets into the spirit of our kidney heroines theme members; daughters who battle through dialysis, sisters who run marathons, aunts who have donated kidneys, friends who raise vital funds for research with bake sales, researchers who have made a difference, health professionals who go the extra mile. We hope you will join in the fun.”

she is very poorly and there are certain things that she should and shouldn’t do but, typical Carla, she is very reckless and chooses to ignore the advice she has been given which has terrible consequences.

Supporters are being encouraged to take part by sharing thoughts, pictures and videos about their kidney heroines (using #mykidneyheroine) on social media, running superherothemed fundraising activities or encouraging their friends and family to take part in the text to donate campaign.

“It is important for her family to be aware but she always thinks she can cope with things on her own. It is interesting to be playing Carla in this situation as she is vulnerable but won’t admit it.

Sandra Currie continued: “We are encouraging everyone to get behind the campaign to honour their own kidney heroines. Anyone can get involved by talking about kidney health or what kidney disease means to them. Taking part on social media will help us spread the message about kidney disease, or you may want to raise awareness of your own struggles or triumphs with an event at work or home.

“As soon as her family know about it they want to help and get tested to see if they are compatible to donate, which means a lot to her. It will be good to see her go on this journey and how it Alison King affects her and the family who plays Carla Connor and if any of them can be a donor, will it be successful. There is such a lot to explore.” Rosie Loft, Communications Manager at Kidney Research UK said: “We’re pleased that the UK’s most popular soap opera has turned the attention of its nine million viewers to issues around kidney disease and organ donation. This is a timely boost to public awareness, with the current government consultations on organ donation in England and Northern Ireland closing very shortly.”

“Together – male or female – we can win the battle to improve the lives of each and every person affected by kidney disease today and in the future.” Who is the Wonder Woman in your life? To find out how you can celebrate your kidney heroine and continue to support Kidney Research UK, visit: www.kidneyresearchuk.org/heroines

NEWSROUND // P03

Make sure your voice is heard Families in England and Northern Ireland are being encouraged to talk about organ donation with relatives, as two public consultations on plans to change the approach in both countries DONOR CARD are launched. Health Secretary, Jeremy Hunt, has called on people to overcome a “fatal reluctance” to talk about organ donation with relatives. Figures from NHS Blood and Transplant show in the past year around 1,100 families in the UK decided not to allow organ donation after a family member’s death because they were unsure, or did not know whether their relatives would have wanted to donate an organ or not. If an individual has not signed up to the Organ Donor Register or discussed organ donation, their family are more likely to object. In October, the Prime Minister announced the Government will consult on a move to an 'opt-out' system in England, shifting the balance of presumption in favour of organ donation, in a bid to save the lives of the 6,500 people currently waiting for a transplant. Meanwhile, in Northern Ireland, where last year a bill to move to an opt-out system failed, a new draft policy is proposed to improve the way organisations go about raising awareness and to improve training for healthcare professionals. Peter Storey, Director of Communications at Kidney Research UK, said: “We see presumed consent as one of a number of things that could increase the availability of organs for transplant and thereby reduce the waiting list. It is not a solution on its own, and needs to be combined with improvements in the resources the NHS has to manage organ donation and, crucially, more funds for research into transplantation so that we can make kidneys work better and last longer.” He added: “Irrespective of whether we have an opt-in or optout system, it is vital that people discuss their wishes with their families, so that if they decide to donate their organs, their wishes can be fulfilled. We welcome these two consultations and would encourage people to participate in order for their voices to be heard.” The consultation in Northern Ireland closes on 5 March and the consultation in England closes on 6 March. For more information, visit: www.kidneyresearchuk.org/news/have-your-say-on-organdonation-in-england-and-northern-ireland

Renal nurse donates her kidney to a stranger A renal nurse from Scotland made the amazing sacrifice of donating her healthy kidney to a patient she will never meet, just before Christmas. Rachel, a 47-year-old health professional of some 30 years, had known for a long time that being a live donor was something she wanted to do. She told Kidney Research UK: “My family thought I was crazy. My husband kept asking me if I was sure but never once did he say ‘don’t do it’. I had a few sessions with a psychologist to establish I was doing it for the right reasons – it’s something all donors go through.

“A life on haemodialysis is not easy and it’s not really a choice. It’s something I see every day and I wanted to do something to make at least one person’s life better. You can only give your kidney once and that’s why I couldn’t choose who to donate to.” After the operation Rachel said she felt tired and sore but she was comforted by the fact she would soon start to feel well again. She added: “It is not something I’ve spoken about much in public because I don’t want other renal nurses to think it is something they should all do – I’m well aware this is my personal choice.”

To donate to Kidney Research UK call: 0300 303 1100


HOW YOUR MONEY’S HELPED // P04

HOW YOUR MONEY’S HELPED // P05

Patients are at the heart of our research – find out who they are and what they do Patients lie at the core of everything Kidney Research UK does, so when it comes to how our research is carried out, it makes sense that they are at the forefront. Our patient involvement schemes tap into individuals’ experiences of living with kidney disease or caring for someone who has kidney disease, and this has helped to improve the work we do. We ensure we have input from the people who matter most, those who have firsthand experience, which is vital to achieving research breakthroughs. Coordinating the patient involvement work for the past three years is Sarah Harwood. Sarah is a kidney transplant patient and has lived with kidney disease since she was 18 years old. She understands firsthand the daily challenges faced by kidney patients. She said: “Kidney Research UK is about more than just funding research – it’s about being involved in that research. Research is made better by patients being involved, it can even help in the development of new ideas.” “One example of this is a recent IgA Nephropathy research project. We had a patient involved in the development stage, the project design. Part of what patients would be asked to do on the trial involved them having two biopsies. As any kidney

“No matter how brilliant the research or the researcher, patients and carers always offer unique, invaluable insights. Patients are the key to research. It is for them and about them, it should involve them. “Better research improves treatment and care and, ultimately, we can offer more hope for a better future for those living with kidney diseases.” Kate Kenyon is a kidney patient who got involved with Kidney Research UK to make a difference. An MA marketing management student, Kate (25) is on the LAC and chairperson of the Grampian Kidney Patients’ Association.

Are you are a kidney patient? Kidney Research UK wants to hear from you if you would like to: c Become part of our patient

network, or join our advisory committee, and lend your voice to the charity; c Join researchers as a

patient representative and be part of a study group working on the development of new research ideas;

Kate Kenyon and her mum, Alison

c Join a patient team on one

of our current research projects and provide advice and support to researchers and other kidney patients; c Share your patient story and

encourage others to support research into kidney disease; and, or

on clinical guidelines and drug funding decisions being made by bodies such as the National Institute for Health and Care Excellence (NICE), the Scottish Medicines Consortium and the All Wales Medicines Strategy Group.

Find out more: www.kidneyresearchuk.org

“These days there is a growing expectation that all research projects will have appropriate patient and carer involvement. There are challenges – we cannot make the assumption that all patients want to get involved and we need to change negative perceptions about research, so patients are treated as people and not numbers. We want to develop a personalised, proactive approach which is accessible and engaging for patients and carers.

We’d like to hear from you

c Help the charity comment

Sarah Harwood

committee as I can apply my experience as a young person who has dealt with having kidney disease.

Get in touch today. Your voice matters and research needs you so join us and have your voice heard. Email: patients @kidneyresearchuk.org

patient who has had a biopsy will tell you, it’s not a nice thing to have to go through. Our patient questioned whether two biopsies were necessary and so it was decided that if a procedure wasn’t completely necessary it wouldn’t be included. The project changed its protocol so that only one biopsy would be needed.” The charity’s Lay Advisory Committee (LAC) plays an essential role in patient involvement and helping engage with patients. There are 22 people involved from across the UK representing all communities, with men and women of various ages and these are also patients from varying ethnic backgrounds. They are the patient voice within the charity, advising trustees and staff, acting as a sounding board for research ideas and plans and being ambassadors for the charity. Sarah said: “It’s really developed as a committee, so it’s now an interactive and consultative body. Of course it’s not just the LAC, it’s about making sure the patient

voice is an integral part of everything we do, from patient protocol to how the results are disseminated to patients at the end; to helping to get the research to the clinical stage. And we make sure the patient voice is central in translating research into clinical practice.” Daniel Beech joined the LAC in 2012 and is also a community champion, giving his spare time to help Kidney Research UK where he can. He said: “I wanted to join the LAC because it is an open forum where we discuss the kidney-related topics of the day, provide advice and opinions on consultations where the charity is a stakeholder and discuss how it can develop and move forward. I really enjoy being on the

Kate had to have peritoneal dialysis for eight hours every day for four years until January 2000 when her mother donated one of her kidneys. It lasted for 12 years but sadly was rejected in 2012. She then had to have haemodialysis, three times a Left, Kate Paget. Above, week, for four years until she had Daniel Beech. her second transplant in 2016. Sharing personal experiences is very important to her, in fact she is adamant that renal care can only truly advance if patients’ views and experiences are listened to and acted upon. “We really need to get more funding for kidney disease and improve care for patients. I had to fight so hard for better care when I was on dialysis because the staffing issue at my hospital was and still is just horrendous. The renal nurses are absolutely amazing, but they’re under so much pressure because of the worsening NHS funding crisis.”

Derby. She told me all about the charity and the LAC and that was that. “My most significant moment so far was being part of the team at the Transplant Games in Motherwell last summer. It was the closeness of the community, not just Kidney Research UK but also other kidney patient organisations. Everyone was striving for the same thing and I thought that was wonderful. It feels so good to be part of a cause so close to mine and my family’s heart.” Kate Paget, who is 37 and lives in Eastbourne, has been volunteering by helping with patient and family information days in London and Birmingham. Kate said: “I was diagnosed with autosomal recessive polycystic kidney disease when I was three and went into end stage renal failure age 34. I received a live kidney transplant in 2014 from an unrelated donor (my auntie by marriage) which was successful and I have been well ever since – apart from a couple of infections – two requiring hospital treatment. I have not required dialysis to date.” And she added: “I attended a Kidney Research UK information event with my dad who supports the charity where I agreed to be a patient representative. It felt like a way of 'giving something back' – I’ve had excellent care/treatment for my condition including a kidney transplant. I understand the importance of patient involvement in research and how the success of the treatment I currently received is only possible because of the research which has been undertaken in the past.” Kate also attended a new professional network for personnel involved in renal imaging meeting last year and spoke about her experiences. She said: “I reviewed documents for the project and wrote a supporting letter for the project to go with the research application. “It is really satisfying to know that in a small way I have been able to contribute to advances in the treatment of kidney disease which will hopefully improve kidney patients’ lives in the future. I was made to feel very welcome at the meeting and felt my contribution has been valued by the team.”

“I first became involved with Kidney Research UK last year when I met Sarah Harwood at a ‘Young Adults Weekend’ in

To donate to Kidney Research UK call: 0300 303 1100


THE BIG INTERVIEW // P06

THE BIG INTERVIEW // P07 people who work full-time during the day and then have evening dialysis.”

Paired donor scheme

Jacqueline chose haemodialysis rather than peritoneal because she wanted to forget all about her kidney failure for the remaining four days a week. She also likes to swim and was concerned the peritoneal dialysis tubes might have prevented her from doing that. “When I first discovered I had kidney disease I knew nothing about it. I looked things up on the internet and sent for two books for kidney patients. They were years out-of-date and seemed very negative, full of scary stories about patients ballooning three stones and developing all kinds of complications. “Reading about the diet restrictions was depressing too. Obviously you want to keep in the best health you can, but kidney failure diets aren’t much fun. You have to avoid fruit and vegetables and cheese and yoghurt, all the foods usually considered good for you. You have to be very careful what you drink, too.”

Jacqueline’s personal story from kidney failure to transplant Kidney Research UK ambassador, Dame Jacqueline Wilson, talks for the first time about her own personal battle with kidney disease and her journey to receiving a transplant Children’s author, Dame Jacqueline Wilson, is admired and adored by millions of readers all over the world, gripped by her stories about family breakdown, serious illness and other such gritty themes. What many of them won’t know is her 100th book was written on a keyboard using only her left hand – as her right arm was hookedup to a haemodialysis machine. On meeting the prolific author she is – like most of her characters – an unwavering optimist. Jacqueline’s approach to her kidney failure and subsequent transplant is as positive and refreshing as she is. Nine years ago she suffered heart failure and was told at the time that her kidneys might be damaged.

“When my heart recovered I actually forgot all about my kidney function and I think it was some two years later when my GP said to me, at a routine check-up, “You know you are in stage three kidney disease?” I did panic a bit at that, as I didn’t know much about it, and was aware that stage three cancer for instance is pretty serious.” For the next two years Jacqueline found herself becoming more tired and began to feel quite ill. When her kidney function reached 10 per cent she made the decision to go onto haemodialysis. She said: “I wanted to resist dialysis for as long as possible as I knew it would take up a large chunk of my working week. I was lucky enough to have my treatment on a unit led by the most wonderful nurses who tried to make sure everyone stayed happy. They

Her 100th book was written on a keyboard using only her left hand – as her right arm was hooked-up to a haemodialysis machine.

were so sensitive and caring, with a lovely sense of humour. To have people with such knowledge about your care makes all the difference and they worked so hard. “I was nervous about dialysis at first but soon got used to it, even the needling. I did faint the first time, but that often happens.” Jacqueline found the thrice-weekly four-hour commitment a bit of a trial, but fortunately was able to use the time to great effect by writing three novels, one of which was to be her 100th book, Opal Plumstead. “I couldn’t type properly as I had to keep my right arm completely still, so I managed to type using just my left hand,” she said. “I also read a lot. I’m not someone who likes to sit for hours doing nothing. I ate a lot too! It’s a bit like being on a plane, you comfort eat even though you’re not hungry.” Despite the commitment needed for dialysis Jacqueline refused to let it hold her back, fitting in interviews and meetings in the mornings before treatment. “I would find it quite hard going to an evening function after dialysis because you feel so washed out afterwards,” she added. “I can imagine it must be very hard for

While on dialysis Jacqueline and her partner discussed the possibility of a living donor transplant. Initially she went onto the deceased donor transplant waiting list, as they weren’t sure if her partner would be able to be a donor due to an underlying medical condition. However, tests showed she could, though the couple weren’t compatible blood and tissue wise. They then decided to pursue the paired transplant route. Jacqueline didn’t want to ask anyone to donate their kidney to her, and was very moved when her partner offered to do so. She took comfort in the knowledge that the doctors and medical staff give donors the opportunity to change their mind at every step, feeling that no-one should ever be pressured into this serious procedure. And she added: “It’s not just the sweetness that my partner demonstrated in donating her kidney to me but the courage she showed to go through with the paired donation. It’s such a massive thing to do and you have to go through a lot of tests, so it’s something you have to think about very seriously. “Having been through the paired transplant process what I would say to anyone in a similar situation is not to give up. We had four attempts at getting a match and by the fourth time we Illustrations: Nick Sharratt

Find out more: www.kidneyresearchuk.org

Donor-recipient pairs who are incompatible and unable to donate directly, one to the other, can register in a national scheme to achieve compatible transplants with other pairs. When two donor pairs are involved it is called ‘paired’ donation. If there is more than two pairs, it is called ‘pooled’ donations. were really starting to think it would never happen – but it did!” She is mindful that she has been given an amazing gift of a new kidney and takes care of herself accordingly. She was very worried when her partner went off for the operation early in the morning. Jacqueline’s own operation wasn’t until the afternoon, and she was enormously relieved to see her partner coming back from the operating theatre, a little groggy, but safe and sound. “After the operation I was a bit sore but it wasn’t anywhere near as painful as I thought it would be. I was sitting up reading the next day, and could go home in five days. My partner was home in three! We hobbled around for a few days at first, but within weeks we were completely back to normal. In fact I felt so much better than normal, full of energy again, with a whole new lease of life. I couldn’t be more grateful.”

Fact file Dame Jacqueline Wilson is fam her brilliant children's novel ous for s inc the Tracy Beaker series, Th luding e Feather series, and The Bu Hetty tterfly Club. The former Children's La has sold over 40 million book ureate s involved with various charit and is ies. She feels it's important to suppo rt work of Kidney Research UK the raise awareness of kidney dis to help ease. She's attended various special eve nts to help raise money for the charity. I think it's very important tha research is done to help eve t ryone with kidney failure now and in the I've seen for myself the gre future. at they're doing. I'm so pleased job that Kidney Research UK is determined to find answers to this disease and improve so many lives.

'

To donate to Kidney Research UK call: 0300 303 1100


OUR YOUNG HEROINES AND HEROES // P09

OUR YOUNG HEROINES AND HEROES // P08

s e o r e h y e n d i k Meet the e r a o h w s e n i o and her h c r a e s e r ’s y a shaping tod Kids Kidney Research (originally the Kidney Research Aid Fund) was established in 1967 with the aim of turning around the distinct lack of support for kidney disease research in young people. In September last year, Kids Kidney Research merged with Kidney Research UK and an extra £500,000 funding was pledged to support paediatric project applications through an annual grants award, building on the legacy of both charities’ support for paediatric research. As well as this promising boost to funding, in the few months since the merger our community of young supporters has started to strengthen and grow. Despite the difficulties many of these children and their families face on a daily basis, their support and dedication to Kidney Research UK has been unwavering. Whether it’s their amazing fundraising or their amazing characters – they truly are our kidney heroes and heroines.

Zach Tierney Football mad Zach was diagnosed with a chronic kidney condition called renal dysplasia when he was five years old. Both his kidneys never Zach Tierney fully developed and are functioning at the same rate as someone who is 80 years old. It is inevitable that he will require a kidney transplant or dialysis during his childhood.

This diagnosis left his family feeling totally devastated. Yet Zach appears to be like any other healthy, happy six year old. His mum Michelle said: “We would find him in the bathroom in the middle of the night drinking from the tap and he wasn’t growing as much as his peers. It is a scary disease as you don’t know anything about it until it’s too late.” Zach and his family have used social media to raise awareness of his condition and they have raised over £4,000 for Kidney Research UK. His football club, Spurley Hey Juniors, gave Zach’s efforts their support by presenting the full squad with new kit displaying the Kidney Research UK logo. Zach’s dad David said: “To say we were overwhelmed was an understatement. It was an amazing gesture and we can’t thank Spurley Hey enough. “Zach is a cheeky little boy who talks about his kidneys as if they are people inside him. He is really brave and resilient and interested in what happens to him in the future.”

Isabella Heading Twenty-four month old Isabella takes life in her stride. It’s hard to believe on first glance that she has had over ten operations in her short life and has endured the sort of intensive treatment most adults would struggle to cope with. Isabella was born with a rare congenital condition and has been on dialysis since she was four days old. Isabella was premature, born at 35 weeks, to mum Emma’s surprise. At that stage nobody had any idea what was ahead. Emma said: “It affected me quite a bit in the early days, because I couldn’t even feed her. It was very difficult to even hold her because of all the tubes. We thought we were having a healthy baby, as all the scans had looked fine. It came as quite a shock when she was born, as she was very sick and her future was uncertain.”

Last summer Zach was also chosen as team mascot and got to lead the Stockport County players out on match day. He also organised a bucket collection on the day raising more than £700.

At 12 weeks old Isabella was allowed home with a nasogastric tube which dad Neil had to routinely put back as she kept taking them out. At six months old the hospital fitted a feeding tube directly into her stomach, but sadly she continued to vomit severely so, in April 2017, they decided to change it to a feeding tube that bypasses the stomach and goes directly into the small intestine. This tube eventually perforated her bowel in May 2017 causing life threatening sepsis. She was rushed into hospital where lifesaving surgery was performed and she was put on to haemodialysis. This means Isabella now has to visit a hospital three times a week for her dialysis and she has to be hooked-up to a feeding tube at home for 16 hours every day. Emma said: “It has meant a huge lifestyle change for all of us. Isabella has spent 70 days in hospital in just one year alone. Things are looking better now and she is going through her vaccination programme. Myself and Neil have just started the pre-transplant tests in the hope that we will be able to donate a kidney to Isabella when she is big enough. “2017 was a hard year for us. Poor Isabella’s body is covered in scars and she gets tired very easily. When we are out and about no one would ever know how sick she is. Kidney disease is such a hidden disease, I don’t think people really think about it unless it affects them directly. “I’m a researcher myself (I work on climate change), so I understand the importance of

charities such as Kidney Research UK. There are so many things we would like to find out about, such as why are patients so sick? And why do they have itchy skin? One of the most distressing things for me as a parent has been Isabella’s lack of appetite and seeing her being sick, sometimes up to eight times a day.”

Lottie Bamford Lottie is six years old and this October she bravely took on a 5k fun run raising over £600 for Kidney Research UK. She took part in the Big Fun Run Ipswich on October 14 with her mum Vicky and her brother Harry running alongside.

was nearly two. After this point, left in a very vulnerable position, Lottie had her kidney removed and, almost instantly, was a different girl. “Lottie’s condition doesn’t slow her down and she takes life as it happens. It has given her a real interest in science and research and she knows so much more than most children her age.” Lottie’s most recent tests have shown that her remaining kidney is functioning at 60 per cent. Investigations are ongoing to help try and maintain this. Lottie is very determined about her future and says she wants to be a “doctor that looks after babies”.

Lottie Bamford

They wanted to help other children like her living with kidney disease. Lottie said: “(I wanted) to raise money for the charity that helps to research how to make kidneys better.” Her dad Rob said: “We are so proud of Lottie and her brother for taking part in the run. Lottie’s kidney condition was diagnosed following an antenatal appointment. From birth she required daily antibiotics to prevent urinary infections. At six months, after suffering from infection after infection, she had an operation to try and address these problems which was unsuccessful, and this sadly became a way of life for Lottie until she

Her favourite toy is her Upsy Daisy doll, which has been by her side during stays at hospital, during treatments and through operations. Lottie has also named her remaining kidney ‘Special Daisy’ and her family refer to looking after ‘Special Daisy’ when they encourage Lottie to help look after her kidney during her daily routine. It is because of this special relationship, that Upsy Daisy and Lottie completed the Big Fun Run together. Sadly, there are many more stories such as Lottie’s, Zach’s and Isabella’s and it is only with the help of our supporters that Kidney Research UK is able to deliver research which is already improving these young patient’s lives. It’s frightening to think that less than 50 years ago the future for a child with renal disease looked very bleak indeed. Thanks to research, their prospects are looking much brighter – but we know there is still so much more to do.

Isabella shows she’s going places.

Find out more: www.kidneyresearchuk.org

To donate to Kidney Research UK call: 0300 303 1100


OUR FUNDRAISING HEROINES AND HEROES // P11

OUR FUNDRAISING HEROINES AND HEROES // P10

Join our team Every year thousands of people take part in the Virgin Money London Marathon and on April 22 some of them will be out there for Kidney Research UK. All have their own reasons for putting themselves through this gruelling test of endurance. Here are just some of their inspirational stories.

Louise shows off her medal after completing a recent half marathon

Clare is running in memory of her big sister Joanna, who sadly died in 2014 from renal failure, 19 months after receiving a kidney from Clare. “I’ve never regretted donating my kidney and I feel proud that I was able to help extend Jo’s life,” Clare said. “I wish it had been longer but it wasn’t meant to be. But, I hope that by raising money for more lifesaving research I can help other families avoid the heartbreak that we’ve been through.

Victoria Dwebeng

Kidney Research UK Supporter Care Officer, Louise Morris, will be running her first ever London marathon as a tribute to her fellow #TEAMKIDNEY runners.

Twenty five-year-old Victoria Dwebeng will be running her first ever marathon as a tribute to her mum Araba, who sadly died in May, just a month after receiving a new kidney.

“And, wow, it really is a challenge! Apart from getting your head around the mind-boggling distance of the race itself, you also have to factor in the months of training and fundraising that you have to do beforehand.

The south London resident grew up watching TV coverage of the Virgin Money London Marathon with her sports mad mum, never imagining that she would one day be one of the runners that her family had so admired. “Mum battled with kidney failure for many years and did everything she could to Danny Howard

Danny Howard Something changed for Danny Howard when he cheered last year’s London Marathon runners across Blackfriars Bridge. He knew it was time to take the plunge and sign up for the race himself.

“I’ve never been a runner but I began training as soon as my place was confirmed. I started off doing short runs but now I’m well on track to completing 26 miles.

The influential dance music DJ, producer and BBC Radio 1 presenter will be running in memory of his dad Chris, who sadly passed away eight years ago after spending five years on dialysis.

“I’ve had no personal experience of kidney disease but the courage and dedication of my fellow runners is truly inspiring. I feel honoured to be part of their team.”

“This is my first event for Kidney Research UK and my first ever attempt at a marathon,” says Danny, who will be running the race with three friends.

Find out more: www.kidneyresearchuk.org

“The London Marathon route passes near to where I live so I’ve watched the race from the sidelines for many years; the atmosphere is amazing. I kept telling myself I’d run it too but I did nothing about it. Last year something caught hold of me and I knew I had to enter this year. “There’s so much passion in the runners and the spectators as well. Everyone really gets involved and I really want to be part of that. “I want to do it for dad, for Kidney Research UK and for me as well. I want to be able to say that I’ve done a marathon and experienced what it feels like to have completed such a phenomenal task.”

It all started back in 2015 when he decided to raise funds for Kidney Research UK as a way of saying thank you to all the people who have helped his mum, Jackie, through many years of ill health, due to kidney problems.

Together, they’ve run for miles, with Betty happily tucked up in her buggy, enjoying the ride.

Louise Morris

“After seeing the effort and dedication that our runners put into last year’s event I felt compelled to sign up myself. A major part of my role involves motivating, supporting and encouraging our marathon runners, but you can never really know what it takes to conquer the event unless you experience it for yourself.

Seamus Kelleher likes a challenge; in fact he’s set himself 24 of them in 24 months, including running the London marathon for two years on the trot!

Lincolnshire mum, Clare Steele, has been training hard for her second London marathon – and baby daughter Betty has been helping her, too.

“I ran my first Virgin Money London Marathon for Kidney Research UK in

“I have the privilege of supporting all our challenge event participants and the Virgin Money London Marathon is one of the events that I look after,” says Louise, who lives in Cambridgeshire.

Seamus Kelleher

Clare Steele

Mum battled with kidney failure for many years and did everything she could to raise awareness about the disease. She was so inspiring.

He decided to raise £3,000 by taking on 12 gruelling running, swimming and cycling challenges across the UK and Europe in 2016, despite initially being unable to swim. But when he reached his target he didn’t want to stop.

Clare Steel and her daughter Betty

2015 and swore that it would be my last, but just days later I felt the urge to do it again. It’s crazy – I suppose running just gets into your blood! “It really is the best marathon in the world. The crowds are so friendly and supportive. I remember I was flagging at one point but then I heard people shouting: ‘Come on Clare, you can do it!’ And I suddenly thought: ‘You’re right – yes I can!”

“The challenges really gave me something to focus on and aim for, especially when mum was in hospital. So rather than end it at 12 challenges, I decided to push it up to 24 and increase my target to £10,000,” said Seamus, who lives in South West London. “I’m hoping to make the London marathon my 24th challenge but I know it won’t stop there. When I first started I just wanted to get through them all but fundraising has become a part of my life now. “It’s such a great feeling to be able to do something to help other people with kidney disease. That’s what really motivates me – and making mum proud.”

Victoria and her mum, Araba

raise awareness about the disease. She was so inspiring,” says Victoria. “She finally got her ‘precious gift’ of a kidney after 10 years on the transplant waiting list and was so excited when I told her that I was going to run the London marathon for Kidney Research UK. She really wanted to be there with the rest of the family to cheer me across the finishing line. “Mum wasn’t able to continue her journey but I hope my efforts will help other kidney patients on theirs. “I was with mum every step of the way through her illness and I know that she’ll be there with me for every step of the marathon.”

Seamus with Beanie the Kidney Research UK mascot who will be at the marathon this year.

You too can make a real difference to the lives those threatened by kidney disease. Whether you sign up to take part in one of our events, want to get ideas and support for your own fundraising or would like to discover ways you can volunteer, get in touch today. We’d love to hear from you. Visit: www.kidneyresearchuk.org/get-involved or call: 0300 303 1100

To donate to Kidney Research UK call: 0300 303 1100


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RESEARCH YOUR MESSAGES ROUND //UP P15 // P13

New study offers unique insight into childhood kidney development

New study to investigate inequalities in kidney transplantation

Professor Paul Roderick A three-year project, linked to one of the largest birth group studies in the world, could greatly advance our understanding of why severe kidney disease is more common in people from a South Asian background.

Dr Pippa Bailey A new, year-long study hopes to discover why socioeconomically deprived people in the UK are less likely to receive a livingdonor kidney transplant. Living donor transplants are considered to be the best treatment, in terms of life expectancy, for most people with kidney failure.

Dr Bailey will now use our £43,855 Research Project Grant to measure the actual extent of these issues, using data from a specially-created questionnaire.

Socioeconomic deprivation can include a lack of financial, educational and employment opportunities and freedoms. People who are deprived are more likely to develop kidney failure.

Her team will study responses from up to 1,000 patients from ten transplant units across England and Northern Ireland. They will have a range of socioeconomic backgrounds and will include recipients of living donor and deceased donor kidney transplants. Responses will be compared to see if there are marked differences in people’s confidence and skill at managing their health or in family support between both groups.

In a previous study, Dr Pippa Bailey and her team at Bristol University, interviewed 32 people who had a kidney transplant from a deceased donor to find out why they had not received a living-donor kidney. The responses suggested a lack of confidence in knowing how to raise the issue with doctors and family, as well as a perception that friends and family would not be willing or able to donate a kidney if they were asked.

Dr Bailey hopes this study will lead to the development of practical ways to help patients and their families gain the knowledge, support and confidence to decide the best transplant option for them.

New diabetes study could have global significance

The team will use state of the art equipment to test thousands of individual cells simultaneously. They will then treat the cells with a number of different drugs to see if it is possible to correct the signalling problems and make the sick, insulin-resistant cells insulin-sensitive and healthy again.

Professor Richard Coward

They hope their research will ultimately lead to the development of new treatments for this devastating disease.

We are funding a three-year study which could lead to new treatments for diabetic kidney disease – the world’s leading cause of kidney failure.

Some of the cells found in the glomerulus

Find out more: www.kidneyresearchuk.org

The Born in Bradford (BiB) study is currently tracking the overall health and wellbeing of over 13,500 children and their families, from pregnancy through childhood and eventually into adult life. These children come from a range of ethnic backgrounds; about half have a South Asian heritage.

Early in diabetic kidney disease the glomerulus (the filtering unit of the kidney) becomes resistant to insulin. The glomerulus consists of three different cell types (podocytes, mesangial cells and glomerular endothelial cells) but it is currently unclear how these

cells develop insulin resistance and if they communicate insulin resistance to each other. Professors Richard Coward and Craig McArdle and their team from the University of Bristol will use the £200,000 research grant to compare healthy, insulin-sensitive glomerular cells to sick, insulin-resistant cells and try to work out the differences in the signalling pathways, both within and between the different cell types.

Professor Paul Roderick and his team from the University of Southampton are collaborating with the BiB team in order to explore the importance of kidney size in the development of kidney disease. Investigating a theory which suggests that South Asian babies have smaller kidneys that are more prone to damage over the child’s life and into adulthood, the team was able to scan 1,500 Born in Bradford mothers to assess their babies’ kidney size at 34 weeks gestation. Results showed that the South Asian babies had smaller kidneys than the babies from a white British background, even after differences in birthweight were allowed for.

Professor Paul Roderick

Using our £180,000 Research Grant, Professor Roderick and his team will now be able to use the planned BiB follow-up at aged 8-11 to also test the children’s blood and urine, in order to assess their kidney function and to see whether it differs between ethnic groups and if it is associated with foetal kidney size. Further funding may be sought to follow up the children in adolescence, in order to track kidney function through the different stages of growth and development.

Health equalities review More to come soon on Kidney Research UK’s large-scale review of health equalities and kidney disease. This will look at the impact of studies such as Dr Bailey’s and Professor Roderick’s – watch this space.

To donate to Kidney Research UK call: 0300 303 1100


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Let’s get moving

Stay in touch

As winter gives way to spring, now’s an ideal time to think about getting more active.

MRI of leg muscles from a patient with chronic kidney disease

Star Tweets

Dr Emma Watson Making small changes to daily routines can have a major impact on mood and quality of life. And new research, partly funded by Kidney Research UK, suggests that building up to a regular exercise routine can even help to reverse some debilitating aspects of kidney disease.

MRI of similarly matched person without chronic kidney disease

“Normally, certain proteins are switched on when we start to exercise, especially when we haven’t done any exercise for a while. These proteins activate muscle stem cells (found around muscle cells) which grow

“Our research has also shown that simple walking exercise can improve quality of life, with one man regaining the strength, energy and confidence to resume his business. Other people even decided to get pet dogs in order to ensure that walking became a permanent part of their daily routines.” and divide to help build stronger, healthier muscle. But, when we studied muscle tissue from some patients with CKD, we found that instead these proteins were suppressed when exercise began. However, the normal protein response did come back at the end of the exercise session, which suggested that these metabolic abnormalities could be improved or normalised with exercise.

“We recruited 54 patients with CKD and devised training programmes for them, with some doing aerobic walking exercise and others combining walking with resistance training (using gym-based weightlifting equipment). We found that patients who did both types of exercise together were able to improve and increase muscle size, muscle strength and physical fitness. Blood pressure

“I believe regular, physical activity can be beneficial to everybody,” says Dr Watson. “The key is to start very gently and build up gradually. Listen to your body and take breaks when you need to. If you have a chronic condition such as CKD you can’t expect to be able to run a marathon, but if you get into a regular routine and keep it up you should soon reap the benefits.”

Get more active by following Dr Watson’s top tips: c Get support: Encourage friends

and family to exercise with you and motivate each other. c Get going: Decide what you want

to do and build up gradually. Start off with some five minute exercise stints. It won’t be a waste of time and you’ll soon progress. c Get outside: Take the

dog for a walk, clean the car, do some gardening – it’s all good physical activity.

Find out more: www.kidneyresearchuk.org

c Get the hoover out: Housework

counts too – and using the stairs more often. c Get to know your area: Join a

local walking/rambling group or try out some gentle exercise classes at your nearest community centre. Pilates is really good for balance, muscle strength and tone. c Get breathing: If you want

to focus on walking make sure you walk briskly. It’s ok to feel

out of breath, as long as you can still maintain a conversation with your walking partner. That’s the level of effort you need to reach in order to get the cardiovascular health benefits. c Get the app:

Download Active 10, the free Government app that can help you monitor the amount of brisk walking you’re doing: www.nhs.uk/ oneyou/active10

c Get a goal – and try to stick to it:

Whatever physical activities you choose, aim to do them regularly. And remember, it doesn’t matter when you start as long as you do start and keep it up.

c Always speak to

your healthcare professional if you have any anxieties about increasing or resuming a physical activity.

*ENTRIES OPEN* World Kidney Day virtual run 08/03/18 £7 entry - medal included & there are spot prizes too This is not for profit - it’s to raise awareness & raise money for @Kidney_Research & @kidneycareuk (& has kept me occupied ) @marathon_sam

and cholesterol levels were reduced and some diabetic patients saw an improvement in their insulin sensitivity.

Dr Emma Watson and her colleagues at the University of Leicester have shown that a combination of brisk walking and weightlifting exercises can reverse muscle loss caused by chronic kidney disease (CKD). Their studies have also given them a greater understanding of what happens in the body to cause muscle wastage. “We wanted to use exercise to try to understand why people with CKD experience muscle loss – especially in their legs – and provide a way to reverse this muscle wastage,” explains Dr Watson.

We’re always keen to hear from our supporters and it’s never been easier to get in touch. You can follow us on Twitter, where we’re @Kidney_Research, and we’re also on Facebook, Instagram and LinkedIn. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or email: pressoffice@kidneyresearchuk.org.

Radio star! Loving today. #organdonation #optout @Kidney_Research

In my local paper today telling my story and helping promote organ donation Dionne Kerr @dionne_kerr

Sarah-Louise Harwood @saz_lou07

2018 Diary dates Event (Location) The Big Half (London) London Marathon (London) Pint of Science (TBC) Newcastle Bridges Walk (Newcastle) London Bridges Walk (London) British 10K (London) Ride London 100 (London) British Transplant Games (Birmingham) Great North Run (Newcastle) Advent Service (Peterborough) Glasgow Bridges Walk (Glasgow)

Date Type 4 March

13.1 mile run

22 Apr

26 mile run

May

Science talks in pubs

10 June

7 mile walk

01 July

7 mile walk

15 July

10km run

29 July

100 mile cycle

2-5 Aug

Sports event

9 Sep

13.1 mile run

Dec

Cathedral service

TBC

7 mile walk

To donate to Kidney Research UK call: 0300 303 1100


£1

How much would £5,000 warm up your winter?

Ticket Draw date 22 March 2018 at 3pm

Enter our Kidney Research UK raffle for your chance to win 50 fabulous prizes

50 fabulous prizes 1ST

£5,000 x1

2ND

£1,000 x1

3RD

£500 x2

4TH

5TH

x10

x36

£100

Make sure you return your tickets by 12 noon on 21 March 2018

We don’t want you to miss out! Request your tickets for the draw visit: www.kidneyresearchuk.org/get-your-tickets or call: 0300 303 1100 If you already have your tickets, don’t forget to return them! The raffle draw is open to all UK residents (excluding Republic of Ireland, Channel Islands and Isle of Man). Tickets are not for sale to or by anyone under 16 years of age. Licence number: 000-004856-C-100 606-001. Registered charity number: 252892 Registered Scottish Charity number: SC039245

£50

Update magazine Spring 2018 Issue 15  

The magazine from Kidney Research UK

Update magazine Spring 2018 Issue 15  

The magazine from Kidney Research UK