Update magazine summer 2014

UpdateTHE MAGAZINE FROM KIDNEY RESEARCH UK

Issue 4 2014

Brave Radio 4 newsreader donated a kidney to her husbandPAGE 10

Keeping active this SummerPAGE 08

We’re investing in the best mindsPAGE 04

Go Purple highlightsPAGE 03

KR7866 - Update Summer 2014 v3REPRO.indd 1 12/06/2014 10:22:46

Welcometo issue 4 of Update Magazine

Warm weather, bright sunshine, long days or holidays abroad are reasons

why many of us love the summer months but being a dialysis patient doesn’t mean having to miss out. With just a little bit of planning; barbecues, local

events and outdoor pastimes such as walking or gardening are

just some of the activities you can participate in. Even a summer holiday

abroad is possible! We tell you how on page 8.

In this issue you can read about some of the research developments we are making on page 12. Unfortunately we are not able to feature them all as there are so many. However, each one really does play an important role in helping us achieve our vision of ‘lives free from kidney disease’.

We had a fantastic response to our second ‘Go Purple’ campaign in March and we hope that next year, with your help, it will be even bigger and better than ever. You can see the highlights on page 3.

Page 4 tells you about how we continue to invest in the best researchers, including Dr Maria Fragiadaki who is researching collagen control in kidney cells – work which could eventually lead to a cure for kidney scarring. We also introduce you to Professor John Feehally who, earlier this year, joined the charity as one of our trustees which we are delighted about.

We look forward to hearing about the events or fundraising activities that many of you will have been involved in over the summer.

As always, thank you for your support; enjoy the read including our inspirational stories by Carolyn Brown and Fran Wright, and have a wonderful summer.

Suzanne Engelbert, Acting Editor

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Tel: 0845 070 7601Fax: 0845 604 7211www.kidneyresearchuk.org

Contributors

Lindsay LeddenAllison ParkinsonNoel HurleyDr Alice SmithCarolyn BrownJan Flint

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Matthew Roberts

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Find out more: www.kidneyresearchuk.org

Have you supported our

The lives of more than three million people in the UK are at risk of chronic kidney disease (CKD) but there are only two million patients registered with their GP as having CKD.

Our aim is to highlight the importance of early diagnosis for those who are at greatest risk and to help identify these undiagnosed patients.

Sandra Currie, Chief Executive of Kidney Research UK, said: “We want to ensure that we boost the number of people being detected early for kidney disease. If caught early enough, the damage done by some forms of kidney disease can be slowed, stopped or even reversed. We also need to attract more support to fund further research if we are going to beat this disease.”

For more information please visit: www.missingmillion.co.uk where you can take a free online kidney health check or you can request an information pack. Or turn to the back page of this magazine.

We launched a regional fundraising campaign in March called ‘Missing Million’ to raise awareness of kidney disease and vital funds for research into this ‘silent killer’.

MISSING MILLIONCAMPAIGN?

Kidney Research UK scores with Chelsea FC! Earlier this year, we won the chance to hold a match day bucket collection at Stamford Bridge, the home of Chelsea FC. On the day, volunteers kindly gave up their time to collect before the match between Chelsea and Manchester United and supporters generously donated over £1,700.


Call our donation line: 0800 783 2973

NEWSROUND // P03

Kidney community calls for action The Kidney Health: Delivering Excellence Report, published in October 2013, set out 16 ambitions for addressing the challenges in kidney healthcare. Ambition 15 is to establish a national strategy for kidney research.

The renal community has taken the lead on this, and formed the National Renal Research Strategy Steering Group. This will be co-ordinated via the UK Kidney Research Consortium (UKKRC), a network of renal experts who facilitate the best clinical research for health in kidney disease, supported by the Renal Association, the British Renal Society and Kidney Research UK.

Chair of the UKKRC, Professor Tim Goodship said: “I am delighted that Kidney Research UK is supporting this vital new initiative. For too long, renal research has lagged behind other specialities in terms of funding, numbers of clinical trials and national attention. Through this project, the renal community has shown that we can take the lead in developing a much-needed national approach to renal research.”

First IgA Patient Information Day Kidney Research UK proudly supported the first ever IgA Nephropathy Patient Information Day, held in Leicester in March. Around 80 delegates attended the day which provided patients with information on current research into IgA Nephropathy, and allowed them to address scientists and clinicians with questions. Dr Karen Molyneux from the University of Leicester led the day and said: “Information days like this are important because patients who know more about their disease do better.”

Go Purple highlightsDuring March we encouraged the UK to ‘Go Purple’ to help raise awareness of kidney disease, and raise money to help fund lifesaving research.

We have teamed up with Clothes for Charity – a new and exciting way to donate clothes and raise money to fund lifesaving research. And, you can do it all from the comfort of your own home! To find out more about the new scheme, visit: www.clothesforcharity.org.uk

Have a spring-clean this summer!

Christy Millar’s Go Purple cake

Antony Chan after his skydive

Researchers at the University of Glasgow Go Purple

Greenwoods Solicitors in Peterborough Go Purple

Melanie Hume’s Go Purple bake sale

Sue Bonnington during her skydive

Hannah Plackett-Smith during her skydive

Lots of you sent us pictures and whether you baked, made purple ribbons to sell, dressed in purple at work… we would like to say a big thank you for taking part!

We also had our very first Purple Plunge skydive on the 15 and 16 of March. Just after World Kidney Day, 36 daredevils jumped from 10,000 feet at airfields in Brackley and Lancaster to raise vital funds.

We sent out almost 400 Go Purple packs, and Go Purple 2014 has raised £35,000. Here are a few of our favourite pictures.



We award a wide range of career development grants to support young scientists working in laboratories and with patients – people like Dr Maria Fragiadaki. We supported Maria’s PhD studies at Imperial College London and funded her research into collagen control in kidney cells – work which could eventually lead to a cure for kidney scarring.

Maria was supervised by Professor George Bou-Gharios, now based at Liverpool University, and co-supervised by Professors Patrick Maxwell and David Abraham.

“Type I collagen is the most abundant protein in the human body and its uncontrolled production leads to kidney scarring,” explains Maria.

“Scarring is the final common factor in all types of chronic kidney disease. It correlates with diminished kidney function and can lead to renal failure.

“We wanted to find out what happens before collagen is actually produced and focused on the role of a gene called CUX1. We discovered that high levels of this gene caused a reduction in collagen production in fibrotic mouse kidney cells but when CUX1 was reduced, collagen production increased and scarring was aggravated.

“This suggests that we may be able to regulate collagen production in kidneys by increasing levels of CUX1 in scarred kidney cells.

“Future funding will hopefully take our preliminary findings further. They may ultimately, after more years of research, help to find a way to stop or reduce kidney scarring.

HOW YOUR MONEY’S HELPED // P04

We’re investing in the We are committed to training the researchers of tomorrow to ensure we can continue to make a difference to kidney patients and their families.

Dr Maria Fragiadaki

“None of this would have been possible without Kidney Research UK’s support. They provided the three-year funding for my PhD, gave me the opportunity to conduct my studies in a wonderful environment and enabled me to share my findings with scientists in the UK, Europe and America. This inspired me to focus on kidney research.”

best minds



HOW YOUR MONEY’S HELPED // P05

This suggests that we may be able to regulate collagen production in kidneys by increasing levels of CUX1 in scarred kidney cells.

We need your helpWe’re forced to turn down four out of every five proposals for potential new projects because we don’t have the funds to support them.

If you want to contribute towards research that really changes lives, please make a donation using the enclosed form, or visit: www.kidneyresearchuk.org/donate

Maria is now a Research Fellow in the academic Unit of Nephrology at Sheffield University’s Department of Infection and Immunity. She is currently investigating the role of signalling pathways (the interpretation of messages sent between cells) in renal disease including Polycystic Kidney Disease in collaboration with Professors Albert Ong and Moira Whyte.

Every year we receive around 10 applications for PHD

Studentship funding, and we fund the very best projects.

We’re currently funding Dr Alison Taylor’s PHD. Alison is a renal registrar and is in the middle of her PHD at the University of Glasgow. Her PHD work will assess the impact of dietary salt intake on the regulation of a hormone (called aldosterone) by the body.

Patients with chronic kidney disease have an increased risk of heart attack and stroke compared to the general population - although the reasons for this are not entirely clear. High blood pressure is common, and causes damage to vital organs such as the kidneys and heart.

Aldosterone is a natural steroid produced by the body, and may play a key role in the development of high blood pressure and cardiovascular disease in kidney patients. Aldosterone controls the way that the kidneys hold on to salt and water.

In healthy people, a high intake of salt in the diet leads to lower aldosterone levels but kidney patients appear to be unable to lower aldosterone levels when they have a salty diet. It is possible that these high aldosterone levels in kidney patients increases damage to the heart and kidneys.

Alison hopes to determine why levels of aldosterone are high in kidney patients, and see how this relates to dietary salt intake.

Case study - Dr Alison Taylor


THE BIG INTERVIEW // P06


Great to have you on board: Professor John Feehally is our new trustee

We are delighted to welcome Leicester nephrologist, Professor John Feehally, to our board of trustees.

John brings a wealth of experience to this important role. He is a Consultant Nephrologist and Professor of Renal Medicine at the University Hospitals of Leicester. He has a long and successful career in kidney research. He is a past President of the Renal Association, and more recently of the International Society of Nephrology.

The big challenge is turning the exciting things we’re discovering about many kidney diseases into things which change treatment for patients.

Professor John Feehally meeting Taiwan Minister of Health in 2013



THE BIG INTERVIEW // P07

Q What does it mean to you to be a trustee of Kidney

Research UK?

Kidney Research UK is an incredibly important charity for the kidney community in this country. It’s the leading charity for supporting kidney research and therefore I think it’s very important that nephrologists like me should play our part in helping to ensure it is run well and is kept absolutely up to speed with everything that is happening. I am very happy and honoured to be a trustee because I think it’s a great organisation.

Q How did you first become involved in kidney research?

It all started back in the early 1980s when I was a young doctor. I found kidney disease incredibly interesting so I decided to specialise in kidney research and I have stuck with it ever since. I’ve concentrated on the immune renal disease IgA nephropathy because back then it was emerging as a very important cause of kidney disease in young adults and very little was known about it.

Q What changes have you seen in kidney research over

the years?

The way we treat people has changed. Although we had dialysis and kidney transplants back in the early 1980s, it’s a different world today. Transplants are now much more successful, work for longer and people’s quality of life on dialysis has improved. We’ve also created more awareness about the early stages of kidney disease and know that if we identify people early there are treatments that can delay or stop their kidney problems.

Kidney research is different too. For example, we can now investigate the genetics of kidney disease in all sorts of ways we could never even have thought of doing ten or 20 years ago. Also, I think we all understand now that you can do really important research which changes things right across the spectrum from the laboratory through to clinical care.

Q What were your initial aims for World Kidney Day when

it was launched in 2006 and what do you think of the event today?

Its primary purpose was to create awareness about kidney disease across the world in many different cultures and economies. That means not only getting health care professionals outside the kidney world more knowledgeable about kidney disease but also the general public – particularly those at high risk of developing the disease, and helping governments fund health care to understand its importance.

We had no idea whether it would be something that would take off quickly or slowly. But from the very beginning, many more countries than we expected took hold of the idea and arranged World Kidney Day activities, to the point that this year we had thousands of activities in more than 100 countries.

It’s become a world-wide awareness day, which is terrific. We now need to find ways to measure its impact to prove that it’s actually reaching people who otherwise wouldn’t be reached and that it’s changing health policy.

Q What are your hopes for the future of kidney research in

the UK?

I think that kidney research in the UK is already very good. We’re not a particularly big country, we don’t have that many kidney doctors but if you look at what we produce we should be proud of what we achieve. We have very good people doing research and I want us to be even better at identifying and encouraging others to become researchers.

The big challenge is turning the exciting things we’re discovering about many kidney diseases into things which change treatment for patients. That often takes a long time and we need to work on shortening this gap.

Q And where do you see our role?

Kidney Research UK has a vital role to play. Not only does it support the best research, it also finds the best individuals – spotting them as research leaders of the future and supporting and nurturing them.

We are not a huge organisation and we don’t have huge amounts of money but we can be very strategic in finding the right individuals and the right projects to promote – and that’s where I think we will continue to be successful.

John was also a founding member of the international committee which launched World Kidney Day.

We recently caught up with John to ask him about his varied career and to find out why his new role is so important to him.

Professor John Feehally presenting International Society of Nephrology ISN Award Moscow 2013

Professor John Feehally meeting Taiwan Minister of Health in 2013



HEALTH & LIFESTYLE // P08

“Our research has shown that simple exercise, such as walking, can help reduce kidney disease symptoms and their frequency, including tiredness and muscle weakness. Walking also has positive effects on factors associated with heart health.

“We recommend building up to about 30 minutes of moderate exercise, three to five days a week. But don’t be put off if that is too much for you. Any increase in your activity level is beneficial, so do whatever you can - there is no need to run a marathon! Choose activities that you enjoy and start gently, increasing your exercise levels gradually. Push yourself a little bit so you’re doing slightly more than you are accustomed to.

“Enjoy the great outdoors this summer, and explore the many parks, footpaths and walking routes around the UK. Get friends or family to accompany you, or join a walking club. Even gardening can provide a gentle workout, and is a rewarding way to get outdoors in the good weather.

“Exercise is good for almost everyone, but if you have severe health problems you should talk to your healthcare team before changing your routine. If you’re diabetic, make sure your shoes fit properly and check your feet carefully

to avoid blisters or sores. People who have had a kidney

transplant and those who have Polycystic Kidney Disease should avoid contact sports such as boxing and rugby.

Keeping active this summer

There’s no bigger motivator to get active than when it’s sunny outside! Regular exercise reduces blood pressure, tones your muscles, lifts your mood

when you’re low and reduces anxiety. Dr Alice Smith from the Leicester Kidney Exercise Team explains how you can stay active this summer.

“Although some dialysis patients feel able to take part in lots of activities, some feel exhausted after each session. But being on dialysis doesn’t signal the end of an active lifestyle. There are many exercises that can be done from a chair, including alternate leg raises, and yoga breathing exercises.

“If you’re heading outdoors, use sunscreen and avoid the strongest sun so you don’t get burnt. This is especially important if you are on anti-rejections drugs for a kidney transplant.”

Alice says: The most important thing is to make exercise a habit. One session won’t help in the long term, but if you keep doing it you will really feel the difference.

Dr Alice Smith



HEALTH & LIFESTYLE // P09

How to have a healthy barbequeSummer is just around the corner so it’s time to dust off the barbeque! Barbequing is a good way to prepare healthy, delicious meals. Jan Flint, Clinical Lead Renal Dietitian at the Royal Free London NHS Foundation Trust, offers her top tips for a healthy barbeque this summer…

“Whilst in the supermarket, opt for options which are lower in salt, fat and sugar. For example, processed meats and some pre-flavoured or pre-marinated options are likely to be high in salt, so read the labels and look for foods with a green code against the salt circle on the front. Or you can prepare your own BBQ foods following some of the tips below.”

Jan Flint, renal dietitian at the Royal Free London NHS foundation trust

Burgers

“These are easy to make–you can use

lean beef or lamb mince, or turkey or quorn.

To add flavour, use herbs or spices rather than salt–you could use cumin,

coriander, garlic or mint. Bind the mixture together with an egg. When you

grill these, any fat in the meat should drip out. Serve on a wholemeal roll but

try not to add high calorie, salty extras like cheese, mayonnaise and bacon.”

Kebabs

“Use chicken for your kebabs, and marinate it

in some lemon, honey, mustard or yoghurt mixed

with garam masala for a spicier option. Then put

the chicken on skewers with peppers, courgettes,

mushrooms and red onion, which will help you meet

your fruit and vegetable allowance for the day.”

“Vegetarians can make kebabs with halloumi

cheese–but it’s high in salt, so try to use more vegetables and less cheese. If

you eat fish you could use chunks of salmon or firm white fish.”

Chops

“Use lean cuts of meat and marinade in

some olive oil with herbs or spices, honey,

mustard, garlic.”

Salads

“If you are on a potassium

restriction you will need to consider

this when selecting your salad. A

small salad (serving spoon size)

would be classed as 1 portion of

your fruit and vegetables per day–

this would include lettuce, cucumber

and half a tomato.

“Remember not all salad is healthy–salads covered in dressings such as Caesar,

mayonnaise or salad cream are likely to be high in fat, sugar and salt. Try

using balsamic vinegar, olive oil and lower calorie dressings instead.”

Angelo Joseph had dialysis in a Turkish renal unit during a recent five-day visit to Istanbul.

“I was nervous before the trip but the unit was fantastic,” says Angelo. “Everyone was really friendly and the machines were all brand new. They even brought me a full Turkish meze with figs and olives!

“My local dialysis unit has a holiday scheme and they sorted everything out for free. But I had to pay 250 Euros on top of my holiday costs for my dialysis treatment. I had to have lots of tests including blood tests, swabs and samples before the unit in Istanbul said I could go there.”

Case study:

Angelo’s holiday

Can I go on holiday if I’m on dialysis?Noel Hurley from the Central Manchester University Hospitals NHS Foundation Trust explains: “Whether you’re on haemodialysis (HD) or peritoneal dialysis (PD), going on holiday is definitely do-able, and the limitations are not as great as you might think.”

Getting started: “Give your dialysis unit at least six weeks’ notice that you’re planning a holiday. Your unit will need to confirm that you’re fit to travel, and can help organise your holiday too.”

Haemodialysis: “Find a unit near your accommodation – www.globaldialysis.com is a good database of international and UK dialysis centres. Your ‘home’ dialysis unit will want to ask your chosen ‘holiday’ unit about their facilities and availability, and your ‘holiday’ unit will need your medical information. Once you’re booked in, remember to take copies of all your paperwork with you.”

Peritoneal dialysis: “If you’re on PD, your NHS Trust can order bags of fluid to be delivered to your accommodation for the duration of your holiday. Then you can continue to dialyse as you would at home.”

Travelling outside Europe: “The cost of dialysis in the UK is covered by the NHS, and in Europe it’s covered by the European Health Insurance Card. But many private units in Europe won’t accept the card and will want payment for treatment. It’s important that this is established from the outset, so there are no surprises when you turn up for your treatment. If you’re travelling outside Europe, you’ll need to cover the cost of your dialysis yourself.”

Things to think about: “Can your hotel accommodate your dietary requirements? If you’re going abroad, talk to your dietitian about which local foods to avoid. You will need to source extra medical cover as standard insurance does not cover pre-existing conditions.”

To find out more about a European Health Insurance Card, visit: www.ehic.org.uk. For more information on holidays whilst on dialysis, visit: www.kidneyresearchuk.org/faq---holidays-and-travel


Brave Radio 4 newsreader donated a kidney to her husband You won’t be hearing Radio Four newsreader Carolyn Brown on the air so often from now on. She has resigned her staff job and is going freelance; in order to spend more time with her ‘other kidney’….. Here Carolyn tells us her story.

INTERVIEW // P10


Carolyn in the Radio 4 studioPhoto: Stan Was


INTERVIEW // P11

My husband and I recently celebrated an important milestone: our first ‘Kidney-versary’. One year ago I gave Bruce my left and - as I frequently remind him – my best kidney.

It was an interesting start to married life. I’d opted out of “honour and obey”, but perhaps should have checked the small print for mention of spare body parts. For twelve of the eighteen months following our wedding we lived through a nerve-wracking catalogue of tests to make sure that I was fit enough to lose a kidney and that Bruce was fit enough to endure the surgery involved in gaining one.

We rode an emotional rollercoaster, and a couple of scary blue-light ambulance trips, through complications and delays always in the fear that at any time Bruce might suffer an infection that could trigger total renal failure and the need for dialysis which we thankfully managed to pre-empt.

During the pre-op tests the stories I read on the internet seemed to suggest that we were talking about odds of one-in-a-million, or more, that two unrelated people would be compatible. In fact we were told only some months later that we were classed as a ‘serious mismatch’. On a scale of one-to-six where one would be the closest match (a twin) we were rated a four. The anti-rejection drugs are

so sophisticated that our far-from-perfect transplant has transformed our lives. A year on, according to his specialist at Queen Alexandra Hospital, in Portsmouth, Bruce’s test results are ‘phenomenal’.

The words serious and mismatch would not have deterred us from going ahead, but may have dented our morale. I was the one who threw a wobbly when the operation got postponed for a second time. Bruce’s pragmatism was what saw us through. As he told the counsellor we both had to meet: “I need an operation or I will die. My wife wants to give me a kidney. I say, Thank you very much.”

I went skiing six weeks after the op, with stern words from my surgeon, Sam Dutta,

I need an operation or I will die. My wife wants to give me a kidney. I say, Thank you very much.

I need an operation I don’t want and Carolyn wants an operation she doesn’t need.


ringing in my ears about taking care of my stitches. This year I am back to full fitness, Bruce’s only blip was a nasty bout of gastro-enteritis which meant he spent a month in and out of hospital, but otherwise he is coping well on his anti-rejection medication and is back in the gym beating the cross-trainer into submission. His energy levels are starting to out-strip mine.

Before the op Bruce summed up our predicament by saying: “I need an operation I don’t want and Carolyn wants an operation she doesn’t need.”

And when my colleagues at Broadcasting House ask after our health I am happy to tell them that both of my kidneys are functioning perfectly well - at opposite ends of the M3.


Your support makes it possible for us to fund the best research by the finest research teams. These three projects will have a significant impact on our understanding of kidney disease.

Research round up – innovative projects funded by you

RESEARCH ROUND UP // P12

See how your money can help

£10 per month could pay for one hour’s research for a non-clinical student researching better treatments into kidney disease.

£25 per month could pay for one hour for a post-doctoral research associate researching better treatments for kidney disease.

£50 per month could pay for a day’s consumables for one of our research fellowships.

Please help us fund even more groundbreaking projects that could lead to a potential cure or new treatment for kidney disease.


Make an online donation at www.kidneyresearchuk.org/donate

In cystic kidney disease, cysts form within the kidneys severely affecting their function and leading eventually

to kidney failure. The only treatments available are dialysis or a kidney transplant. Neither of these costly and

invasive therapies are a permanent solution.

Professor Andrew Fry and his team from the Department of Biochemistry at the University of Leicester aim to investigate the cell biology that causes cystic kidney disease. We have provided the £134,468 funding for the two-and-a-half-year research project.

They will study two particular proteins – Nek8 and Inversin – which play a role in kidney development. These proteins interact to coordinate signals received by the developing kidney. But in childhood cystic kidney disease the signals change and faulty signalling means that fluid-filled cysts form on the kidney.

They want to understand what goes wrong in the cells to make the kidney lose its structure and cause tissue to become overgrown. In the long term, they hope that their research will lead to better treatments for cystic kidney diseases.

New study to investigate the causes of cystic kidney diseaseTwo poorly understood proteins will be at the centre of a

new study into the causes of cystic kidney disease – the most common form of inherited kidney disease.

A normal kidney (L) and a kidney covered in cysts (R)



RESEARCH ROUND UP // P13

Study could herald new and better treatments for glomerular diseaseA protein could hold the key to a new treatment for glomerular disease – a leading cause of end stage kidney failure.

The glomerulus is a cluster of microscopic blood vessels in the kidney that help to filter waste products from the blood. It is created from several different cell types and damage to one of these cells, the podocyte, is a feature of glomerular diseases such as diabetic nephropathy and focal segmental glomerulosclerosis (FSGS).

Dr Eugenia (Jenny) Papakrivopoulou and her team from the University College London Institute of Child Health have discovered that levels of a protein called Secreted Frizzled-Related Protein 2 (sFRP2) are increased in damaged podocyte cells and in instances of glomerular disease. We have given her a £40,000 innovation grant to find out more about the protein and what it does.

The findings from this preliminary study will then be used to design a larger, longer study which will look into the potential of this protein to prevent cell damage. This research could ultimately lead to the development of new and better ways of treating glomerular disease.

New study could help to prevent patients with acute kidney injury developing chronic kidney diseaseWe are funding an important new study which aims to identify people at risk of developing long-term kidney damage (known as chronic kidney disease or CKD).

The £84,000 ARID study (AKI risk in Derby) will involve the recruitment of up to 1,000 former hospital in-patients over the next three years and will be led by Dr Nick Selby and his team from the Royal Derby Hospital.

They will focus on two groups of people – those who have experienced sudden reductions in kidney function (called Acute Kidney Injury or AKI) and those who have not. Both groups will be asked to give blood and urine samples over a three year period and researchers will keep track of their general health for a further two years.

AKI is very common in hospitalised patients, often occurring when they are unwell from another illness, especially in more vulnerable patients with long term medical conditions. AKI is not a physical injury to the kidney and usually occurs without symptoms. In the majority of cases kidney function improves before patients leave hospital. However, there is very little research that follows up the progress of these patients in the months and years following AKI to find out if it has any effect on patients and their kidney function in the longer term.

The study will also examine different ways of identifying people at higher risk of developing CKD; this will lead onto future work to halt its progression.


Left: a normal glomeruli. Right: a diseased glomeruli with increased levels of sFRP2 (shown in brown).


FOCUS ON... // P14

Fran’s winning formula


Fran Wright loves sport. It helped her deal with childhood illness and now she’s channelling this passion to raise vital funds for life-saving kidney research.

and was rushed to hospital in a critical condition. I’d gone through all the stages of kidney failure without being looked at!

“I was dialysed for six months and had a kidney transplant at Manchester Royal Infirmary in 1979. That was 35 years ago and since then I’ve been able to lead a perfectly normal life.

“Training gave me a sense of normality when I was poorly. Sport had always been a major part of my life and I didn’t want to lose that. For me it was very important to try to keep that bit of normality.”

This passion has helped Fran, her husband David and an ever growing army of cyclists raise over £150,000 for us over the past five years through a series of increasingly challenging bike rides across Europe.

Training gave me a sense of normality when I was poorly. Sport had always been a major part of my life and I didn’t want to lose that. For me it was very important to try to keep that bit of normality.

When she was two Fran contracted a rare blood disorder called Henoch-Schönlein purpura (HSP). HSP causes blood vessels to become inflamed and results in a skin rash, joint and tummy pain. It’s not usually serious, but in rare cases it can cause inflammation of the kidneys and even kidney failure.

Doctors thought she was clear of the condition at eight but things started to change when she was 13.

“I was a swimmer and a gymnast and I trained all the time but I started to get very tired and developed headaches and nosebleeds, explains Fran.

“This went on for nearly 12 months but my GP just thought I was a hypochondriac. One morning I woke up and couldn’t speak

This summer’s challenge is a five-day 500-mile Barcelona to Nice ride in aid of Kidney Research UK and Kidneys for Life, a charity raising funds for Manchester Royal Infirmary’s renal units.

“They take months of preparation and the rides can be quite tough at times, says Fran. “But it’s an amazing feeling when, at the end, you can say ‘I’ve done this, I’ve done it for kidney research and I’ve raised all this money in the process.’”


YOUR MESSAGES // P15

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. 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 e-mail: [email protected].

Stay in touch

Hi,

Please find enclosed a cheque for £100 from my employer Nationwide Building Society for Kidney Research UK. They have given it to me as I completed a sponsored skydive on 18 April in support of Kidney Research UK, and they offer a matched funding scheme to donate up to £100.

I chose Kidney Research UK as my charity, as my partner has had a kidney transplant due to having chronic kidney disease. Raising money for this charity therefore has a direct impact on those most important in my life. I am really pleased that I have raised a total of £1,530 to date, and hope the money goes to supporting her, and other people with the same condition.

People can still donate to my fundraising page, here: www.doitforcharity.com/CHefferman

Thank you,

Chris Herfferman


Today is a very special one for me. 25 years ago today, I was lucky to receive a kidney transplant. Not from a family member, but a total stranger, who, as far as I know, died in a road accident.

If he hadn’t carried a donor card, and his family hadn’t given permission, I probably wouldn’t be here. I have gone on to have a very full and active life, and have this week, had my latest health checks. Everything is “A OK”

So thank you to a man I never knew, and a family I’ll never meet.

Jules Wallace (18.04.14)

Thanks to all the Kidney Research UK supporters during the London Marathon...the cheering, support and massage after was amazing after a tough and sunny 1st Marathon. The work done by this charity has helped and will help my family that suffer from Polycystic Kidney Disease.

Emma Medus (17.04.14)

STAR

LETTER!

We supported @Kidney_Research at our recent wedding as new hubby & grandpa have chronic kidney conditions.

Karen Thomas @cornishkaren (24.04.14)

Great day at @LondonMarathon Thanks to @Kidney_Research for reception

Dan Challenger@Dan_Challenger (15.04.14)

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Health Questions Answered“I’ve got to have one of my kidneys removed and I’m worried. What will happen to the other one?”

The remaining kidney should grow to compensate the loss of your other kidney. For this reason,

it’s larger and heavier than normal and so it’s more vulnerable to injury. Be aware of the increased risk of injury with heavy contact sports. There is evidence to suggest that people with one kidney should avoid sports that involve higher risks of heavy contact or collision, such as rugby or boxing.

Most people with a single normal kidney have few or no problems, but your GP will want to monitor you closely. You’ll have annual urine and blood pressure checks, and your kidney function will be checked regularly too. However, the decrease in kidney function is usually mild, and life span is normal.

QA

For more information about kidney disease, visit the health information pages on our website: http://www.kidneyresearchuk.org/health-information


HELP US FINDTHE MISSING

MILLION

Every day your kidneys save your life.Just like a bin man, they take all the waste and rubbish out of your body and get rid of them in your urine. But if your kidneys can’t do their job properly, neither can your urine. And your body slowly poisons itself from the inside.

Registered charity No. 252892. Scottish charity No. SC039245

Two million people in the UK already know they have kidney disease. But another million people don’t know. The damage is gradual, the signs aren’t obvious and there is no cure. We urgently need to fi nd this missing million before more lives go to waste.

Please detach form and return to: FREEPOST RTGZ-KUHJ-XHKU, Kidney Research UK, 2A Halifax, Melksham, SN12 6YY

If you’re worried about someone, request an info pack. Please fi ll in your details:

Surname

Forename(s)

Address

Postcode

A MILLION PEOPLE

HAVE KIDNEY DISEASEDON’T KNOW THEY ALREADY

✁


Update magazine summer 2014

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Transcript of Update magazine summer 2014