Update magazine November 2013

Update Issue 2 2013

THE MAGAZINE FROM KIDNEY RESEARCH UK

A famous face joins our fight against kidney disease PAGE 06

Saving the lives of peritoneal dialysis patients PAGE 04

Our guide to winter wellbeing WIN a copy of Brian Turner’s ‘A Taste of Summer’

A lesson in coping from this amazing 9 year old PAGE 14

PAGE 08

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Welcome to issue 2 of Update.

As we near December, I’ve been reflecting on 2013 and all the experiences it has brought.

Whatever you have experienced this year, positive or negative, what happens to us can help us learn and improve ourselves and the world around us.

Some of you reading this might have just discovered that you have chronic kidney disease and are now experiencing a different way of life. Perhaps you’ve run your first marathon this year, donated your kidney to a loved one, or organised your first fundraising event for the charity.

This issue of Update is full of experiences. Read about our supporters coming together en masse – some for the first time – to walk seven miles to help us raise money (opposite). Read about how certain communities are not experiencing the level of care available to them at the end of their life, and what we are doing to tackle that (page 10). And actress and new Kidney Research UK ambassador, Nina Wadia, tells us on pages 6-7 about her experiences with kidney disease and how it led to her lending her voice to our cause.

London Bridges Walk triumph More than 1,000 supporters took to the streets of the capital this July for our annual London Bridges Walk.

The weather was glorious, spirits were high and we looked set to exceed our target of £75,000 to help fund vital kidney research. Among the revellers were new charity Ambassador Nina Wadia and her former EastEnders co-star Nadia Sawalha.

Fitness enthusiast Nadia led a large group warm-up with DJ Oliver Scott from Star Radio, Cambridgeshire. They were also joined by fitness instructor Julia McCabe, before Nina cut the start tape to get the walk officially underway.

A sea of purple supporters then made their way along the Thames, crossing eight of London’s iconic bridges before returning to Potters Fields Park near Tower Bridge for a celebratory finish. The day ended with kidney patients and family members sharing their inspirational stories with the cheering crowd.

The great news is that we have smashed our fundraising target and raised almost £80,000! This winning format was repeated at our first ever Glasgow Bridges Walk on 22 September, attracting 400 participants and will be held again next year.

Find out more about our new Ambassador Nina Wadia in The Big Interview on pages six and seven.

So if, like me, you’re in the reflective mood, take a moment to think about all you’ve experienced this year, and how this can help you move forward in 2014. As a charity we continue to assess all the work we do every year. This helps us shape the future of kidney research so that we can improve the lives and the experiences of those affected by the illness.

I hope you enjoy this issue. Have a wonderful Christmas!

Rachel Andrews-Ingram, Editor

Contributors

Printed by

Jan Flint Lindsay Ledden Allison Parkinson Brian Turner

Print 4 Business Ltd

Photographer Matthew Roberts Ian Tennant Designed by www.adeptdesign.co.uk

Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ Tel: 0845 070 7601 Fax: 0845 604 7211 www.kidneyresearchuk.org

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NEWSROUND // P03

Patient survey results revealed We had a fantastic response to our recent patient survey, which will help us shape our future research.

Leading financial markets operator set to raise cash to fund research into PKD ICAP, a leading markets operator and post trade risk and information provider, have chosen us as one of many different charities who will benefit from their charity fundraising day on 3 December.

Nearly 1,000 kidney patients completed the online survey and highlighted the renal research areas that they think we should focus on.

The money we receive will fund a special project which aims to understand polycystic kidney disease (PKD).

We then went back to them to find out why they thought their chosen research areas were the most important for the future.

A number of our celebrity ambassadors and supporters will be joining us on the day to help ICAP staff, who will be in all manner of fancy dress, raising as much money as possible. To read more about ICAP Charity Day go to: www.icapcharityday.com

All the results have now been collated and can be found on our website: www.kidneyresearchuk.org

Actress Goldie Hawn attends ICAP 2012

Find out how they get on in the next issue of Update.

‘Thanks a Million’, Cardiff City FC! In August we were one of 50 charities lucky enough to receive a £15,000 donation from Cardiff City FC, as part of the club’s ‘Thanks a Million’ scheme. Rosemary Morgan and Jean Fenton from our Cardiff shop collected the cheque, with Rosemary describing the experience as “an honour”.

Our patient survey has been a big success

Christmas wrapping There’s not long to go until Christmas! Check out our online shop for a great selection of Christmas cards and gift wrap and gift ideas. There are luxury crackers to add the fun factor to your Christmas dinner. Visit: www.charitycardshop.com/ kidneyresearch

Advent Service

Celebrate the ‘Gift of life’ Celebrate the ground-breaking research projects that are helping to save and transform people’s lives at our Advent Service at Peterborough Cathedral on Monday 2 December.

The annual service, conducted by the Dean of Peterborough, amongst the wonderful and unique architecture of the cathedral, offers an opportunity to reflect on the three million people in the UK who are under threat from chronic kidney disease.

If you would like to attend, or make a donation, please call: 0845 070 7601 or email: enquiries@kidneyresearchuk.org

Rosemary and Jean collect the cheque from Cardiff City FC

Don't forget !

ee kidney health fr r u o e k ta n You ca ould have your sh if e se to k c e ch ked. Just visit: c e h c n o ti c n fu kidney g/ researchuk.or y e n id .k t r o p p su -Check health/Health

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HOW YOUR MONEY’S HELPED // P04

breakthrough that could save the lives of peritoneal dialysis patients Dr Angela Summers

Here we look at a breakthrough project which uses a highly sophisticated new imaging technique to help with the early detection, treatment and ongoing monitoring of encapsulating peritoneal sclerosis (EPS) – a rare but extremely distressing and potentially life-threatening disease for kidney patients.

EPS is an inflammatory disorder that spreads across the peritoneum (a membrane which is made up of two layers. One layer lines the abdominal cavity and the other layer lines the organs).

As the inflammation spreads, there is the risk of small bowel blockage. This is because the gut starts to stick together as the peritoneum is replaced with hardened tissue.

You helped us fund a pilot study involving researchers from Manchester, Cambridge, Warwick, Sheffield and Rotherham Universities.

Project co-ordinator Dr Angela Summers, EPS and Transplant Research Fellow at Manchester Royal Infirmary, explains their new discovery: “Peritoneal dialysis (PD) is a very user-friendly form of renal replacement therapy. It allows

patients a lot of independence; they can carry on working and have their dialysis at home. EPS is very rare, and it usually happens as a result of being on PD for a number of years. Surgery is the best treatment in specialised centres such as Manchester and Cambridge. But EPS is not always diagnosed properly and patients may have painful gastro-intestinal symptoms that grumble on and on for weeks, even years before it’s picked up.

Because of this, the death rate is high, patients tend not to be able to eat, they become weak and can starve to death.

“We used a Kidney Research UK Innovation Grant to develop a new way of scanning the peritoneum called cine-MR. These types of grants are extremely useful to us because they give us the opportunity to investigate

completely new ideas. The findings can then be explored in larger research projects.

The idea behind cine-MR is to look at movement rather than structure. A classic CT scan can give good pictures of soft tissues in the body which do not show on ordinary X-ray pictures, but the images are still static. Cine-MR can produce moving images and we believe that if the bowel is moving in a different way it may indicate that there is something wrong. Cine-MR does not expose the patients to radiation so can be repeated more often.

We are now trying to prove that this is a better way of screening patients who may be at risk of getting EPS or patients who have some sort of gastro-intestinal symptoms. We can then get them seen by surgeons before they become really sick.

This would reduce the number of patients dying from EPS. We have already screened two patients referred to us for surgery and the cine-MR clearly showed areas of the gut which were not moving, causing pain and discomfort. The EPS was confirmed when they underwent corrective surgery and were able to eat normally again.

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HOW YOUR MONEY’S HELPED // P05

EPS

the facts Healthy volunteer 1

c Encapsulating peritoneal sclerosis (EPS) is a very rare but life-threatening complication in peritoneal dialysis (PD) that affects men and women equally. c A cocoon forms around the small and large gut, eventually choking it; it also restricts movement of abdominal contents.

EPS patient 1

c Patients are very sick: they can’t eat, have severe gastro-intestinal symptoms, experience extreme weight loss and, if left untreated, can starve to death. c Incidence and death rates are hard to estimate because the condition is so difficult to diagnose but the risk appears to increase the longer a patient is on PD.

s

c A recent Australian study found EPS was extremely rare in patients on PD for less than two years but was present in 19.4 % of patients who had been on PD for longer than eight years.

The next step

Angela and her colleagues now aim to look at patients in Cambridge and Manchester before and after their operations so they can definitively say that cine-MR screening can identify EPS.

Once all the data is collected they may seek funding from Kidney Research UK for a larger project to start screening all patients on PD. Angela says: “Hopefully in a future grant we’ll be able to scan at more regular intervals should any of the patients start developing gastro-intestinal symptoms, and get them referred for surgical intervention before they end up very sick. If we can take this project into a larger study, it could be in clinical use in a couple of years.”

These types of grants are extremely useful to us because they give us the opportunity to investigate completely new ideas.

Healthy volunteer 2

c One British study also found that EPS accounted for 7.7% of deaths in PD patients. c Many lives could be saved by cine-MR screening because patients could be identified for surgery before they become extremely sick.

Healthy volunteers and patients with EPS were scanned using the new cine-MR technique. It was able to show clearly that there was significantly less movement in the bowels of the EPS patients See pictures to the right.

EPS patient 2

key

High movement

Low movement

We need your help

g us to Funding shortages are forcin five turn away four out of every t could tha ts jec pro – as ide research treatment. lead to a potential cure or new t stage of a project like You could help us fund the nex lly changes lives. Please Dr Summers’, research that rea eyresearchuk.org/donate make a donation at www.kidn

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THE BIG INTERVIEW // P06

A famous face joins our fight against kidney disease British actress Nina Wadia, star of Goodness Gracious Me and BBC soap EastEnders, is the latest celebrity to become an Ambassador for Kidney Research UK.

Reproduced with the permission of Sony Pictures Television, CPL Productions and Derek Batey Enterprises

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THE BIG INTERVIEW // P07

Nina has first-hand experience of the damage that kidney disease can do, as her mother passed away as a result of polycystic kidney disease.

Here Nina tells us why her new role is so important to her.

Q

What made you decide to become an Ambassador for Kidney Research UK? I saw what my mum went through. It’s hard.

I wanted to do whatever I could to raise money to get the research done as soon as possible so other families don’t have to go through the same experience.

Q

You marked the start of your new role by taking part in our London Bridges Walk. What was your highlight of the day?

I was just overwhelmed by the positivity and happiness. It’s been hard for so many people but they were amazingly upbeat.

Literally everyone was so positive. Seeing that huge sea of purple is something I will never forget. I was extremely honoured to be a part of it and I’ll definitely be doing it again next year and every year that I’m around. It was nice to see Nadia Sawalha too. I noticed she’d customised her t-shirt, which was really cool. That’s going to be my challenge for next year – to style out my purple shirt.

Q

One of our recent studies showed that South Asian kidney disease patients are not receiving the right levels of care at the end of their lives. Are there any issues around kidney disease that you feel should really be brought to the public’s attention?

I’m a massive supporter of organ donation.

Mum’s first transplant was rejected, the next was accepted but when I realised mum’s transplant was not going to last forever it was a massive shock. I signed up as soon as I could and I passionately believe that if you are someone who can donate – do donate.

In the South Asian community there is a huge demand for transplants, especially kidney transplants, but people are not signed up. Those same people still expect that, if someone in their family gets ill, they should get a kidney. You can’t just expect that, by some miracle, someone is going to help – you’ve got to step up.

Q

You and your husband Raiomond recently appeared on All Star Mr & Mrs and raised £5,000 for us. What was that like?

I tell you what, it put my marriage at risk! It was like being in an exam that you couldn’t study for – you either know your partner or you don’t. They asked some very strange questions!

My husband doesn’t like being in front of the camera but he did it because he knew we could raise a lot of money for this charity. I can actually pinpoint the moment I fell in love with him. My mum was in the upstairs bedroom doing home dialysis and when I came home I just heard this laughter upstairs. I found him lying on my mum’s bed; his head tipped backwards reading absolute rubbish from a magazine and making her laugh. I knew then I was going to marry him – he just took such good care of my mum.

If someone in their family gets ill, they should get a kidney.

You can’t just expect that, by some miracle, someone is going to help – you’ve got to step up.

Q

What have you been up to since EastEnders?

I’ve done a few things for This Morning and ITV; made a short film called Puja Nights; took part in a new British Asian comedy movie that will be out next year called Amar Akbar and Tony; and then I took the whole of the summer off to be with my kids. At the end of that I did two little shows with them. In one my nine year-old daughter learned to drive a manual car (which is brilliant!) and in another my son raised £1,000 for charity. I think it’s really important to instill in children that if you get together with people and support them, you can do good things.

Q

How would you spend your perfect day?

We actually had one this year! We were in Woolacombe Bay in Cornwall and we found a tiny nook with just the most perfect soft golden sand – and on a hot enough day where the water wasn’t even cold. We just laughed our way through the day. It was brilliant. The kids didn’t moan, I didn’t moan and my husband was relaxed – hurray!

Q

2013 is fast approaching, have you made any New Year’s resolutions yet?

I’m going to do the same one I did this year because it works so well, though it’s very hard to do. Just try to be as honest as you can in the moment. If someone’s doing something you don’t like tell them straight away. It’s brilliant for stress relief. Try it, it works!

Nina and husband Raiomond on All Star Mr & Mrs

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HEALTH & LIFESTYLE // P08

Winter well

­­being

As it gets colder outside, you might be tempted to stay in and hibernate.

But it’s important to remain active and healthy during the winter months, so we’ve got a few tips to help along the way.

Get enough sleep

Keep germs at bay

Go outside

Eat a good breakfast

It’s recommended that we sleep for between seven and nine hours every night, but most of us only manage six-and-a-half hours. During the winter, we should make the most of the longer nights and catch up on those hours of missed sleep.

If you have an underlying health condition, like kidney disease, your immune system might be weak, making it more difficult to shake off a cold or the flu. To avoid picking up bacteria, wash your hands often, lathering for around 20 seconds before rinsing your hands. Keep a hand sanitiser in your bag in case you can’t get to a sink. It’s also worth considering having a flu vaccine, which can help protect against the virus. People with long-term conditions like kidney disease are among the most at risk. Around 760 people were admitted to intensive care with complications of flu last year. Speak to your GP who will be able to advise.

Just because it’s getting colder doesn’t mean we should stay indoors and lounge around! Why not try some winter-themed activities like ice skating? If that’s not your idea of fun, you could always head off for a winter walk.

Just be careful if it’s icy – wear shoes with a good grip - and make sure you wrap up warm!

On chilly winter mornings, warm up by having a hearty bowl of porridge for breakfast.

Oats help release energy slowly throughout the day, keeping you energised and full up till lunch. The fibre in oats can also help control blood sugar and cholesterol. But avoid buying ready flavoured porridge mixes, which can be high in added sugar. Instead, buy rolled oats and make your porridge from scratch using half milk and half water. To give it an extra kick, try sprinkling a little cinnamon over the top or topping with blueberry compote.

If you have trouble getting to sleep, it might be because your sleeping environment is not ideal. When the clock rolls around to bedtime, make sure your TV is turned off, and your bedroom is dark and quiet. You could also try ‘winding down’ before you go to bed – try having a warm bath to relax, or reading a book to unwind your mind.

Regular exercise helps to improve circulation, enhance mood and self-esteem, and control weight. It will also help boost energy levels, which should make it a bit easier to get out of your warm bed on cold mornings.

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HEALTH & LIFESTYLE // P09

Competition!

Brian is getting ready for summer already and has very kindly agreed to give away a copy of his book ‘A Taste of Summer’ to one lucky Update reader. To be in with a chance of winning, just answer the question below.

READER OFFER!

Eat more fruit and veg It’s recommended that we eat five portions of fruit and vegetables every day. Lots of winter veg is back in season now, and is perfect for use in a hearty stew or soup – easy ways to make sure you’re getting your five a day. If you’re a kidney patient, be careful of potassium levels. Sprouts are high in potassium, so why not swap them for runner beans or broccoli? Even if you’re going to roast your vegetables, make sure you boil them well beforehand to reduce their potassium content.

We’re offering you the chance to win one of three Smartwool hats – perfect for wrapping up warm and keeping active this winter!

Jan Flint

Brian Turner’s braised beef stew with tomatoes and spring onions (Serves 4)

c 500g large sliced stewing steak c 1 onion, finely chopped c 2 cloves garlic, minced c 140ml red wine c 1 litre beef stock

Jan says: “To keep your salt intake down, use reduced salt stock.

Or you could make your own stock using herbs, spices and leftover chicken or lamb bones. Provided you don’t add salt to this, it would be a good alternative to stock cubes.”

b) Yorkshire c) Belfast Email your answer to: update@kidneyresearchuk.org, along with your name, address and telephone number and you could be cooking up a storm with Brian’s help! The closing date for the competition is 6 January 2014.

How to create the dish

As the nights draw in, it’s time to pack the barbecue away and settle in with a hearty stew. Top chef and restaurateur Brian Turner has dished up a delicious ‘winter warmer’ recipe for us. Jan Flint, renal dietician at the Royal Free Hospital, is also on hand with tips to help make Brian’s recipe more kidney patient friendly.

c 2tbsp groundnut oil

a) Glasgow

To enter, just tell us where the 2014 Winter Olympics will be held. Email your answer to: update@kidneyresearchuk.org, along with your name, address and telephone number and we could be announcing you as the winner in the next issue of Update! Closing date: 6 January 2014.

Winter warmer

Shopping list

Where is Brian Turner from?

c 100g peeled diced carrots c 100g sliced celery ure al treas Nation urner c 1tbsp tomato purée T Brian c 8 tomatoes, concasse c 200g chopped tinned tomatoes

Jan says: “Tomatoes are high in potassium.

For those on dialysis I would suggest cutting out the tomato puree, and using tinned tomatoes to substitute the fresh, as tinned tomatoes are lower in potassium.” c c c c c

1 sprig rosemary 1 bay leaf 200g shredded spring onions 1tbsp chopped parsley Mashed potatoes, to serve

ge pan.

1. Heat the oil in a lar our. s and fry to a good col che bat in f 2. Add the bee to one side.

3. Take out and keep start to colour. lic to the oil until they gar d an ion on the dd A

4. wine and ee and stir, then add the 5. A dd the tomato pur reduce by two-thirds. rots, celery and and add the stock, car in k bac f bee the ut P

6. tinned tomatoes. s are boiled tant that the vegetable for 3-4 Jan says: “It’s impor ly on to the stew. Even if before they are added t.” ten con the potassium minutes this will reduce ng up to the boil. bri d 7. Add the herbs an hours until just for approximately 1¼ on lid a h wit er imm

S 8. cooked. p warm. just the meat and kee 9. Carefully take out n a strainer. the d an ough a liquidiser 10. Pass the sauce thr cooking. ish and add the meat, fin 11. Return to the pan rs of the atoes and three-quarte 12. Add the concasse tom spring onions. inkled with r minute then serve spr .

13 Cook for a furthe mashed potatoes. d an s ion on spring parsley, the rest of the is too high in fluid ts on dialysis, this dish Jan says: “For patien m the stew.”” much of the sauce fro so try not to have too

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FOCUS ON... // P10

Nasrat Bhatti

Professor Gurch Randhawa

Reaching communities that need our support A dedicated group of individuals has helped to ensure that South Asian kidney disease patients know what care and support is available to them as they approach the end of their lives.

It was really rewarding to be able to make people in the Asian community aware of the help that is available to them.

Recruited and trained by us, the ten-strong team has spent the last year working closely with patients, families, community groups and faith groups in their own communities across Ealing, Luton, Leicester and Bradford.

the white community. The leading cause of kidney failure is diabetes, and an Asian person with diabetes is ten times more likely to develop kidney failure than their white counterpart with diabetes.

They have shared information about end-of-life care issues and the support available for patients and families to over 2,700 people at specially-organised events.

This could include care in a hospice or at home, pain relief and emotional support for patients and their families.

The project arose from a study we funded with help from the Big Lottery Fund at the University of Bedfordshire. We found that South Asian kidney disease patients were not receiving the right level of end-of-life care, because they were unaware of the care and support available to them.

Bradford resident Nasrat Bhatti used her experiences as a former hospice worker to help explain the range of care and support available to people in her local area.

The four-year study took place in hospitals across Ealing, Luton, Leicester and Bradford.

It also found that some staff, particularly nurses in dialysis units, felt unable to discuss end-of-life care with patients because of a lack of confidence and time.

She said: “It was really rewarding to be able to make people in the Asian community aware of the help that is available to them. I speak Punjabi and Urdu and did a lot of translating for people who didn’t understand. Wherever we did the events people were really interested and wanted to know more.”

Information-sharing is vitally important because kidney failure affects the Asian community up to five times as much as

Professor Gurch Randhawa, Principal Investigator on the project said: “It’s vital that the South Asian community know that they do have choices, even at the end of life.”

We will continue to help doctors, nurses and other healthcare professionals better understand patients’ needs at the end of their lives by supporting information events and study days.

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FOCUS ON... // P11

Making EVERY Kidney Count We have launched our ambitious new Making Every Kidney Count appeal to accelerate ground-breaking research into improving kidney transplantation.

Our aim is to raise an additional £3 million over the next three years to fund research programmes that will increase the number of kidneys available for transplant and ensure that transplanted kidneys last longer.

We are the only charity to make this pledge and our expertise means we can select the best research specialists, working in the top institutes in the UK to speed up the pace of innovation.

Several major fundraising events are being organised including an online auction and a charity golf tournament. The EVERY appeal has also been accepted for this year’s Big Give Christmas Challenge – a matched giving initiative which means supporters’ online donations can double in value.

Sandra Currie, our launches the appeal. CEO,

The appeal has been launched to help people like Alex (11).

He says: “I’ve got this condition where my body attacks my own kidneys. I wouldn’t normally be able to have a transplant, because my body will attack the new kidney.

But the doctors decided I must have a break from dialysis so I can recover and grow a bit. In January I had a transplant which will hopefully last for a couple of years so I can play and eat like my friends. This appeal could help doctors make my new kidney last longer.”

Top kidney researchers throughout the UK have warmly welcomed the appeal and have already suggested a number of possible research programmes.

Our appeal Chairman John Bartlett and several influential supporters have already signed up as members of the ‘EVERY’ Development Board, each pledging to raise £150,000 towards our total. There are also friends of the ‘EVERY’ appeal who will use their expertise to help raise more money and increase public awareness.

Alex, 11, and his sisters after his transplant.’

Development Board member and transplant patient Pieter van Aswegen says: “I am supporting the EVERY appeal in order to give something back after receiving the gift of life so compassionately and unselfishly from my friend John. This wonderful cause will give people hope by making more kidneys available for transplant, making them work better and last longer.”

You can help our EVERY appeal

Auryn, 7 years old.

llenge and double the value of your Be part of the Big Give Christmas Cha ation as close to 10am on 5, 6 and 7 donation by making an online don give.org.uk/project/everyappeal December at: https://secure.thebig Board Member or Friend of To find out more about becoming a ring Suzanne on: 01733 367 871 se plea “Making EVERY Kidney Count” searchuk.org. or email: suzannebaines@kidneyre

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24/10/2013 16:55:35

RESEARCH ROUND-UP // P12

Research round up – innovative projects funded by you Your support allows us to fund the best research by the finest research teams. These exciting new studies will have a major impact on our understanding of kidney disease.

Seventeen-month-old Great Ormond Street Hospital patient Finlay Laurence will be part of the new study. Finlay, pictured here when he was nine-months old, has been on dialysis since he was eight weeks old.

Left: a cystic kidney Right: a cystic kidney treated with the VEGF-C protein

New study could improve life expectancy of children on dialysis

Potential new treatment discovered for polycystic kidney disease

We are funding an international study which could improve the life expectancy and the quality of life for children on dialysis.

A protein called VEGF-C could hold the key to the prevention of cyst formation in polycystic kidney disease (PKD), the most commonly inherited form of kidney disease.

This three-year research project, costing £200,000, will involve 150 children on long-term dialysis from the UK and Europe and will be led

by Dr Rukshana Shroff at Great Ormond Street Hospital (GOSH).

They will compare children on conventional haemodialysis (HD) and Haemodiafiltration (HDF) and will monitor growth and nutrition, heart and blood vessel scans, blood tests and quality of life.

There are currently more than 120 children in the UK on HD. Some children on HD die of heart disease in their 20’s and 30’s due to complications, including thickening of the arteries due to abnormal calcium and phosphate levels, and accumulation of kidney toxins in the body. HDF is a newer form of dialysis, more commonly used in Europe, which removes many more toxins from the body. Survival rates in adults on HDF have increased by more than 35% and children show improved appetite and growth.

If the study shows that HDF improves children’s heart and blood vessel health, growth, appetites and wellbeing, it may be adopted as the preferred type of dialysis for children in the UK.

The fluid-filled cysts destroy normal kidney structure, leading to kidney failure, and to-date the only potentially effective treatment has been found to have side effects.

Dr David Long and Dr Paul Winyard, from the Institute of Child Health at University College London, may have made a significant breakthrough.

They believe that like tumours, cysts require an adequate blood supply to grow. Their team are looking at ways to regulate kidney blood vessels to try and stop cyst formation.

We have given £153,475 to fund their three-year research project.

Dr Long’s team have already tested VEGF-C on mice with PKD and shown that it slows the growth of their cysts.

The team will now investigate how VEGF-C actually works and will look into ways of improving effectiveness of VEGF-C in the hope it can have a more dramatic effect in slowing or stopping cyst development.

This research will ultimately lead to a new way of treating patients with PKD.

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New Projects

RESEARCH ROUND-UP // P13

Thank you Including the three projects we have mentioned here, since June 2013 we have invested over £1.7 million into kidney research projects around the UK. Your kind donations have also helped fund the following research projects: Two projects looking at polycystic kidney disease in London and Leicester; total investment of £326,066 The new scanning method (right) can show areas of scarring in the heart, indicated by an arrow, which cannot seen on the conventional MRI (left).

A new way to detect scar tissue and heart injury in kidney patients We are funding a two-year study which will look at a new way of scanning the heart for kidney patients on dialysis.

Dr Paddy Mark and his team from the University of Glasgow will use the £39,850 innovation grant to study a new method of MRI scanning to detect muscle enlargement and scar tissue in the left ventricle – the main chamber of the heart.

Kidney patients on dialysis have a very high risk of heart disease.

One telling sign can be the enlargement of the left ventricle muscle which can cause abnormal heart rhythms (arrhythmia). These can be life-threatening. If scar tissue is also present, patients can be at even higher risk of developing arrhythmia.

MRI scanning uses strong magnetic fields to produce detailed images of the inside of the body. It can already provide a detailed analysis of how the heart is working but the new method will be able to detect scars that can’t normally be seen.

Dr Mark hopes this new way of scanning will also be used to identify patients at risk of heart disease so they can get the right treatment much quicker.

A project looking at diabetes and kidney damage in Bristol; total investment of £18,601 Four projects finding out more about the kidney filtration system in London and Bristol; total investment of £386,949 A project looking at making kidney transplants last longer in Leeds; total investment of £127,237 Two projects looking at acute kidney injury in London and Derby; total investment of £210,895 A project looking at kidney damage in Kent; total investment of £198,252 A project looking at the quality of life of kidney patients in London; total investment of £15,617 A project investigating urinary tract infections in Kent; total investment of £28,897 Look out for news about these projects on our website, Facebook and Twitter, and in future issues of Update.

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FOCUS ON... // P14

Fantastic Fenella Seven-year-old Fenella Sharp is a self-confessed tomboy. She’s the only girl in her Huddersfield Beaver group, plays the drums like her dad and loves playing basketball with her big brother.

She idolises American basketball star Alonzo Mourning because they both share something in common – a rare form of kidney disease called Focal Segmental Glomerulosclerosis (FSGS).

FSGS makes the immune system attack the kidneys, causing the body to constantly try to damage and reject them. There is currently no cure and transplants aren’t always successful because FSGS can attack the new kidney too.

Fenella’s condition is being monitored as part of the University of Bristol’s web-based patient rare disease registry research study (RaDaR), a project funded by us which aims to learn more about rare diseases including FSGS, so that future treatments can be developed.

She was diagnosed in February after years of picking up viruses and illnesses. The only constant symptoms were extreme tiredness and what Fenella described as a beeping feeling in her chest, which was later diagnosed as hypertension.

Fenella has good kidney function at the moment but she sometimes needs to take time off school, has to limit her exercise, take daily medication, have regular blood tests and must stick to a low sodium diet. So foods like cheese, ready meals and savoury snacks are off the menu.

“She’s really fantastic,” says Fiona, “She takes her tablets no problem and we’ve mastered having her bloods done. She thinks her 24-hour blood pressure monitor makes her look like Lara Croft and she wore a Fez to meet her consultant, just like her other hero Dr Who. She loves cooking and she’s now organising a Christmas craft stall for Kidney Research UK.”

We need to start routinely testing blood pressure and urine when children attend GP’s and inpatient units, and if protein is found is must be immediately taken seriously.

Fenella knows exactly what she wants to do when she grows up: “I want to make tea for the Queen – and I think I’ll make her a chocolate cake!”

Mum Fiona explains: “We only started to find out what was wrong after a random urine test by a nurse at our GP’s revealed very large levels of protein. We were still told it was nothing serious. Then later in the week we were suddenly told to take her into hospital and were then referred to Leeds General Infirmary renal team.

“We need to start routinely testing blood pressure and urine when children attend GP’s and in-patient units, and if protein is found is must be immediately taken seriously.”

She thinks her 24-hour blood pressure monitor makes her look like Lara Croft and she wore a Fez to meet her consultant, just like her other hero Dr Who.

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YOUR MESSAGES // P15

Stay in touch 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: update@kidneyresearchuk.org.

Dear Sir, Please find enclosed a cheque to the value of £200, raised from a collection at my husband’s funeral. I had suggested that the mourners bring a small posy from their gardens and donate the money they would have spent on bought arrangements to Kidney Research UK.

R STA R! TE LET

This charity is always in our thoughts, as my youngest son has had two transplants from his siblings and at present is very healthy. His first transplant was from his twin brother on their 21st birthday, the second two years ago at 37 and from his sister who was 47.

Yours faithfully, Vivien Woodcock

Star Facebook post Thank you to all my friends and friends of friends - especially to Karen who opened up her house and garden to raise over £600 for Kidney Research UK. The rain didn’t stop us having a ball.

Mug

Star Tweet @Kidney_Research I walked the Glasgow Bridges Walk yesterday with 9 of my friends and family and we raised £3,000 for Kidney Research UK! Holly Wishart @hols_w (23.09.13)

Today I registered to run the Great North Run for @Kidney_Research yayyyy #trainingstartsnow Bethany Grace @Bess_ (14.10.13)

Competition

Every issue we give away a mug to the writer of our Star Letter - but we’ve had so many great letters that we’ve run out of mugs! We’re offering Update readers the chance to design our new kidney-themed mug. Just cut out the template and use it to design your mug, then post it back to the address above, with your full name and contact details. The winner’s design will appear on our new mugs along with their name, and they’ll receive one too!

Annette Thorpe (17.08.13)

Just wanted to say thank you for the support at mile 12, the brew and massage at the end of the Great North Run. It is always a pleasure to meet some fantastic people, 5 years down.... many more to come.

Chris Froes (16.09.13)

Health Questions Answered In the next issue of Update, we will be answering some of your health questions. Do you want to know more about how much salt you should be eating, or about the effects of long term dialysis? Simply email your question to: update@kidneyresearchuk.org with ‘Health Questions Answered’ in the subject line or write to us at the address above, we could be answering your question in the next issue.

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Celebrate the

life of a loved one and give hope to others When my wife Gillian died I vowed to celebrate her life and help the many others who are living with kidney disease. That’s why I created a tribute fund.

Gillian was diagnosed with acute renal failure at 17 and got her first transplant the day before her 18th birthday.

The kidney gave her seven dialysis-free years. During that time I met and fell in love with her, we had our daughter, Rebecca, and we built a life together.

When the kidney failed and she had to go back on dialysis it devastated her. But Gillian picked herself up, put a smile on her face and got on with life.

Gillian got the call after 10 years on dialysis that a suitable kidney was available. This one wasn’t so good and didn’t work and we lost her on 7 June 2010.

Not a day goes by where I don’t think about her and miss having her with us.

She remains my inspiration. That’s why her tribute fund is so important – it’s a focus for us all. Friends and family can make donations, post messages on special days and sponsor my sporting events and challenges.

It’s a comfort to know that whenever we do anything for Kidney Research UK we’re also doing it for Gillian.

Gillian picked herself up, put a smile on her face and got on with life.

David Carty: www.kidneyresearchuktributes.org/GillianCartyTributeFund Create a tribute fund today and help us raise money for vital research. For more information e-mail: legacies@kidneyresearchuk.org or call: 01733 367 846 or: 01733 367 849 Registered Office: Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ. Kidney Research UK is a limited company registered in England.

Registered company No. 905963 Registered Charity No. 252892.

Registered Scottish Charity No. SC039245

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