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PRESS RELEASE 9 July 2014
ISSUED BY THE IRISH KIDNEY ASSOCIATION IN ASSOCIATION WITH GREAT ORMOND STREET HOSPITAL
IRISH CHILD IS FIRST IN UK TO BENEFIT FROM TECHNIQUE WHICH LEADS TO SUCCESSFUL KIDNEY TRANSPLANTS IN ‘UNTRANSPLANTABLE’ CHILDREN
A treatment that allows for successful kidney transplantation in patients who have rejected previous transplants, has been carried out on an Irish child, Megan Carter from Coolook, Dublin, for the first time in the UK at Great Ormond Street Hospital. The technique means that children deemed ‘untransplantable’ due to their high levels of powerful antibodies can receive organs successfully.
Kidney transplants are sometimes rejected due to antibodies, known as human leukocyte antigen (HLA) antibodies, that fight against foreign objects or organs in the body. These antibodies arise from previous transplants, blood transfusions or pregnancies and, when they exist organ transplantation can become impossible. Around 30% of adults are thought to have HLA antibodies, which can cause serious complications post-transplant, including a severe rejection with loss of the transplant, infections, bleeding and even death.
The percentage of children who have these antibodies is generally low, however the greater number of transplants a person has, the more chance that they will have HLA antibodies, which may react with future transplants. As multiple transplants are becoming more common in children, the number who have HLA antibodies is increasing meaning a greater number of organs are at risk of rejection and more children are denied a transplant.
The new technique, carried out by a team at GOSH, sets about removing HLA antibodies using a filtering process of blood, called plasmapheresis, in which blood is taken out of the body, filtered to remove HLA antibodies and then re-introduced back in to the child. HLA antibodies are known to be difficult to remove from the body as it is harder to target them specifically than with other antibodies. As there will still be antibodies in the patient, which can react when the kidney is transplanted, this technique requires stronger immunosuppressant drugs to be administered to the patient in order to make sure that as many HLA antibodies are removed and to reduce the likelihood of them causing severe rejection of the kidney. In the past, patients would have lost these kidneys due to severe rejection, resulting in the requirement for dialysis.
In the first three months following transplant, the risks are high while the child’s immune system is suppressed but patients are monitored closely and can usually go home after a few weeks.
Dr Stephen Marks, Consultant Paediatric Nephrologist and lead of the kidney transplant programme at Great Ormond Street Hospital, explains: “This is the first time this procedure has been performed in the United Kingdom in a child, which is important as children have different immune systems compared to adults. Historically, children with HLA antibodies would not be able to receive kidneys from living donors and would be on the waiting list for deceased donor kidney transplants with very little chance of being offered an organ.”
He emphasises that “kidney transplantation offers the best quality and quantity of life for children with severe irreversible kidney failure and the new technique could make transplants possible in these children when it hasn’t been previously, avoiding their reliance on dialysis.”
Mr Nizam Mamode, Consultant Transplant Surgeon at Great Ormond Street Hospital, who led the team that carried out the procedure, says: “I am very pleased that we were able to offer a child this transplant, which hopefully will give them a much improved, and longer, life. We have developed this programme to give similar children and their family’s hope, where previously none existed, and although this is only the first case, we hope to provide many more children with a new lease of life.”
Mr. Mark Murphy, Chief Executive of the Irish Kidney Association said, “The Irish Kidney Association wishes to acknowledge the essential health care cooperation between the UK and Ireland. In the last three years 31 children from Ireland benefited from specialist organ transplantation conducted in UK Hospitals. Pediatric Kidney transplantation is routinely carried out in Temple Street Hospital. The nature of the complexities involved in re-transplanting Megan Carter again highlight the importance that a partnership approach to rare conditions that a country the size of Ireland will always require.”
Megan Carter, 14 years old, from Coolock, Dublin was born with problems with her kidneys that led to her receiving a kidney transplant at Temple Street Hospital in her native Dublin in 2011. Megan’s body rejected the kidney leading to it being removed the following day and requiring life-saving dialysis on a daily basis.
Megan was placed back on the transplant list but her chances of getting a kidney were low. She had elevated levels of antibodies, meaning that chances of rejecting the kidney were high, and so her chances of receiving a further organ and having a successful transplant were very slim.
With almost no chance of a donor, the family felt helpless until Dr Stephen Marks got in touch and said he could help. He outlined a technique being carried out successfully in adults that flushed out HLA antibodies and could mean that Megan’s dad, Edward, who wasn’t considered a viable option as a donor, could in fact give her his kidney.
After travelling to GOSH and having her antibodies removed over an intense week, she successfully received a kidney transplant from her father. After the transplant, the family noticed an immediate difference in Megan with Megan’s mum, Carol, saying it was “like she had come to life in front of our eyes. Her hair was glossy, eyes were bright, colour in cheeks and she was the child that we should have had before.” Megan also commented that “For the first time in my life, my eyes are open”
Three months on and Megan’s immune system is almost up to full strength. The change in Megan is visible both day and night and she’s a happy, normal child. She’s not tired anymore and has ‘got her life now.’
Carol says: “It was fantastic of Dr Marks and Mr Mamode to take us on. We were at our wits end and we felt like all avenues led to a brick wall.”
While both parents still stress the need for organ donation they believe the 80 per cent success rate of this procedure offers families in similar situations real hope for the future.
For an organ donor card Freetext the word DONOR to 50050 or visit website www.ika.ie It is also possible to download an organ donor card on smartphones by searching for ‘Donor ECard’ at the iphone store or android market place. Your wishes to be an organ donor can also be included on the new format driving licence which is represented by Code 115.
For further information please contact:
Rachel Twinn – 020 7239 3039 (Great Ormond Street Hospital); firstname.lastname@example.org
Gwen O’Donoghue, Irish Kidney Association mob. 353 86 8241447
Mark Murphy, Chief Executive, Irish Kidney Association. Tel. 353 1 6205305 mob. 353 87 2571235
Notes to editors: Great Ormond Street Hospital for Children NHS Foundation Trust is the country’s leading centre for treating sick children, with the widest range of specialists under one roof. With the UCL Institute of Child Health, we are the largest centre for paediatric research outside North America and play a key role in training children’s health specialists for the future. Our charity needs to raise £50 million every year to help rebuild and refurbish Great Ormond Street Hospital, buy vital equipment and fund pioneering research. With your help we provide world class care to our very ill children and their families. www.gosh.nhs.uk
My name is Brian O`Reilly Aged 58, I am currently on the Transplant List for a new Kidney.
My motivation is to raise much needed funds for the Irish Kidney Association’s Renal Support Centre which is on Beaumont Hospital Grounds. This house is used for the families of Patients who come mainly from outside the Dublin commuter belt, and need somewhere to stay and to be close to their loved ones in Beaumont. So, with this in mind, I have decided to Cycle the Great Western Way Cycle track (42km) on Saturday 2nd of August 2014.
Any donations you can give will be much appreciated.
On August 14th last, Nurney GAA Club lost one of it’s greatest member’s when John Kelly passed away at the age of 65. John had been ill since 2004 and between that time and his passing was on dialysis three times per week, had a kidney transplant that lasted four years, two heart bypasses and a number of amputations.
Despite his illness he always kept his passion for the GAA and supported his club and County right up to the end, even attending a local club game just day’s before his death. He loved nothing better than watching his club or attending Croke Park to support his beloved ‘Lilywhites’.
In 2010 John gained National prominence by being voted ‘Ireland’s Most Dedicated GAA Supporter’. The publicity he received from this accolade meant nothing to John, his biggest delight was that his club received €15,000 as a result of his success.
In 2012 Nurney GAA Club organised their first ever ‘Road to Croker’ Sponsored Cycle and this event was repeated again last year. During discussions to organise the 2014 event it was agreed that it would be a fitting tribute to John to name this annual event in his memory and link up with another organisation very dear to him, The Irish Kidney Association.
The ‘John Kelly Road to Croker Cycle’ will take place on Sunday June 22nd commencing at Nurney GAA Club, Co. Kildare at 9 am and finishing after 64Km in Croke Park.
Participants from all clubs and organisations are invited to take part and a ‘Club Challenge’ is being organised as part of the cycle whereby participants can raise funds for their own club/organisation or charity. The first €100 sponsorship received goes to the cycle event, which includes a free commemorative Cycling jersey, with all extra sponsorship over €100 going to the organisation of your choice.
Food, refreshments and transport from Croke Park will be provided for all cyclists.
For further information or to register please contact:
Pauline Gallagher , Secretary Organising Committee,
Clarey, Nurney, Co.Kildare.
or e-mail: email@example.com
At the age of seven I was diagnosed with Type 1 Diabetes. Over the years I had a normal life, as far as possible, but after three pregnancies I was in Renal Failure. In the past ten years I have also had 3 heart attacks and two strokes, receiving two stents last October. My kidney has also failed and I am back on Dialysis… but this doesn’t stop me.
I am currently in training to compete in the 2014 European Transplant & Dialysis Games in Krakow, Poland (16th to 23rd August).
In order to do this I need to raise €1100.00 and to this end I am looking for sponsorship. I hope you can help me get there and thank you for taking the time to read this.
Linda Waters (Age: 50)
Tommy Flaherty donated a kidney to his partner in 2011 and was inspired to write the song, The Gift of Life. He worked with Paul Gurney and Charlie McGettigan to produce the song and they have kindly given it to the Irish Kidney Association.
Click on the image below to listen to it and please share it with your friends.
PRESS RELEASE 31st December 2013
Preliminary Results on 2013 Transplantation in Ireland
2013 has been a record year for Organ Transplants in Ireland. 293 organs were transplanted compared to the previous record of 275 in 2011.
The highlight achievement was the outstanding growth in Lung Transplantation in the Mater Hospital from a record 14 in 2012 to a staggering 32 in 2013. This is more than the equivalent of the previous four years of Lung Transplantation from 2009 to 2012 which totalled 31.
The second highlight is the consistently record breaking Living Donor kidney Transplant program in Beaumont Hospital which had 38 living donors and resulting Transplants. It brings the total living donor kidney transplants to 155 since the start of the service seven years ago.
The generosity of the 86 deceased donors and their families in 2013 dramatically altered and saved the lives of 245 people, 10 of whom received two organs. There were 55 Liver transplants performed in St. Vincent’s Hospital and 11 Heart transplants also conducted in the Mater Hospital.
In Beaumont Hospital a total of 195 transplant operations took place. 185 Kidney operations of which 38 were from living donors and 147 from deceased donors, 10 of the 147 also had simultaneous pancreas transplants. When you add in the 38 living donor operations to the 195 transplant operations you see the size of the record activity of the Beaumont Hospital transplant team in 2013 topping the 227 figure of 2011 by 6 to 233 operations in total.
Commenting on the 2013 preliminary figures, Mr. Mark Murphy, Chief Executive of the Irish Kidney Association said, “Transplantation is a national team effort. The public are an essential element of the team with their generosity to donate organs. The organ procurement service, the acute hospitals throughout the country and the three transplant teams from St. Vincent’s, the Mater and Beaumont Hospitals have all achieved outstanding results in very difficult times for the health services. In the HSE 2014 Service Plan we can see more investment in management of organ donation nationally which must give encouragement to the 550 people on transplant waiting lists (of which 480 are waiting for kidneys) because more organ donors will result in increasing transplant activity even more in the years to come.”
SUMMARY OF PRELIMINARY 2013 FIGURES
Deceased Donors 86
Transplants from Deceased donors.
Living Kidney donors and transplants. 38
TOTAL TRANSPLANTS 2013 293
For organ donor cards Freetext DONOR to 50050 or visit the Irish Kidney Association website www.ika.ie. Smart phone users can download the “Organ Donor E-card” app from the App store or Android Play Store.
For further information contact:- Gwen O’Donoghue, Publicity, IKA. mob. 086 8241447
Mark Murphy Chief Executive, Irish Kidney Association, mob. 087 2571235
You may claim tax relief on a Form MED 1, at the standard rate of tax (20%), (with the exception of nursing home expenses for which tax relief is still available at your highest rate of tax) for certain medical expenses incurred by you, on your own behalf or on behalf of another person. Most medical expenses, with some exceptions e.g. routine dental and ophthalmic care, qualify for relief.
You cannot claim relief for any expenditure which has been or will be reimbursed, e.g. by VHI, Laya Healthcare, Aviva Health, etc., or where a compensation payment is or will be made.