Tag Archive: blood

You Could Help Give Someone a Second Chance of Life

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Thanks to a stranger six-year-old Gaurav Bains survived his fight against a rare blood disorder. You can register to be a potential lifesaver too.

In June 2013 Gaurav was diagnosed with a rare blood disorder, called infantile monosomy 7 syndrome. His family were told that he’d urgently need a bone marrow transplant in order to prevent leukaemia from developing.

Around 30% of patients in need of a blood stem cell or bone marrow donation are lucky enough to find a matching donor within their own family. However, unfortunately Gaurav’s parents, Gurprit and Sandip, and his sister, Kiran, were not a match. Like in Gaurav’s case and 70% of patients living with a blood cancer he needed to find his match from a stranger to have a second chance of life.

The search was on to find a match for Gaurav but it was made even harder due to his south Asian heritage – there are relatively few potential donors from minority ethnicities on the UK blood stem cell donor registry. The blood cancer charity DKMS exists to find lifesaving blood stem cell donors for anyone in need.

Luckily a match was found in November 2013 and the bone marrow transplant took place on 19 December of the same year. At the beginning of 2017 Gaurav and his family travelled to Germany to meet his lifesaving stranger, Stefan, so they could thank him in person.

Finding lifesavers

Every 20 minutes someone in the UK is diagnosed with a blood cancer. It is the third most common cause of cancer death in the UK. Yet less than half of the UK population are aware of blood cancer issues.

There is no single cure for blood cancers. But, a blood stem cell donation from a genetically similar person can often be the best, and last, option for treatment.

There are two methods which blood stem cells are collected; around 90% of donations are taken from peripheral stem cells collections through the blood stream or a donation of bone marrow is collected from the back of the pelvic bone.

The need for more Asian donors

The chance of being diagnosed with a blood cancer is not the same for everyone. The majority of registered blood stem cell donors in the UK are white northern Europeans, people of other ethnicities may have less chance of surviving blood cancer because it is harder to find a matching donor.

Latest figures show the proportion of people of Asian heritage on the national blood stem cell registry is just 5%, while white northern Europeans make up 78% of the potentially available donors.

Help the fight against blood cancer

That’s why DKMS has launched its latest campaign – to raise awareness and encourage more people to join the fight and ‘swab to be a lifesaver’.

Gaurav’s dad Sandip Bains said: “We were so overwhelmed when we were told there was a match for Gaurav. The gratitude that you feel towards a complete stranger knowing they have given your son a second chance of life is one we will never forget.

“The fact we were lucky enough to be able to thank Stefan in person was incredible and we will forever be grateful. For me to be able to share another father’s day, birthday and Christmas with Gaurav is an incredible feeling. Until the problem hits home we were completely oblivious, that’s why the work DKMS does in raising awareness of blood cancer and the need for blood stem cell donors is so important.”

How you can help

If you are aged between 17-55 and in general good health please sign up for a home swab kit at dkms.org.uk and go on standby to save the life of someone just like you.

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Harsh criticism on lack of info on UK’s largest genetic blood disorder

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Professor Kamlesh Khunti says people with Sickle Cell disease look well despite being in excruciating pain

Professor Kamlesh Khunti says people with Sickle Cell disease look well despite being in excruciating pain

 

An awareness drive to educate people about the UK’s biggest genetic blood disorder has been launched in Leicestershire and the East Midlands to coincide with an international campaign.

Resources have been made available to educate people and raise awareness of sickle cell disease ahead of World Sickle Cell Day, which takes place on Monday, 19th June.

The condition is a genetic blood disorder affecting about 15,000 people in England, but two out of three people with it say doctors and nurses are not providing enough information, according to the first national survey into the condition.

The campaign has been organised by NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East Midlands. The organisation is a collaboration of NHS, universities, patients and industry turning research into cost-saving and high-quality care through cutting-edge innovation.

Resources have been shared on the CLAHRC East Midlands website, including an infographic factsheet called ‘Living with Sickle Cell Disease’.

Professor Kamlesh Khunti, Director of CLAHRC East Midlands and Professor of Primary Care Diabetes & Vascular Medicine at the University of Leicester, said: “Sickle cell disease is often invisible in nature, people look well despite experiencing regular episodes of excruciating pain; but it is a serious long-term condition and is the UK’s biggest genetic blood disorder.

“This first-ever nationwide survey has been vitally important in helping us to understand the experiences of those living with the condition so we can identify how we can improve their care. On the back of the survey, we have planned some events to help increase awareness and knowledge of the condition in Leicestershire.”

A spokesman for the Sickle Cell Society added: “A lack of awareness can have a devastating impact on sickle cell patients. World Sickle Cell Day provides an opportunity to raise awareness of the disorder to families and the professionals who take care of them. We welcome Leicestershire’s awareness drive, and we hope it will help make this invisible illness more visible.”

The survey was carried out by the charity the Picker Institute Europe and was commissioned by NIHR Collaboration for Leadership in Applied Health Research and Care Northwest London hosted by Chelsea and Westminster Hospital NHS Foundation Trust and whose lead academic partner is Imperial College London and, in partnership with the Sickle Cell Society.

People with sickle cell disease and their families told researchers that greater awareness of the condition and more information about coping with pain and treatment options would improve their experiences.

The survey of 722 people also revealed poor understanding and knowledge of the condition from staff in emergency care settings compared to specialist-led healthcare staff.

A total of 62 per cent of those surveyed reported that healthcare staff did not give enough information to others, such as schools or employers about their condition.

Additionally, 38 per cent of respondents felt they did not have enough information about coping with pain.

Sickle cell disease is the name for a group of inherited conditions that affect the red blood cells, the most serious type is called sickle cell anaemia.

It mainly affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin. In the UK, it is particularly common in people with an African or Caribbean family background.

People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and they can become stuck in blood vessels.

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Sewa Day blood donation drive

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SEWA DAY: Donors at the last Sewa Day National Blood Donation Drive in Preston

SEWA DAY: Donors at the last Sewa Day National Blood Donation Drive in Preston

 

Bradford charity launch campaign to encourage Asian blood and organ donors

Did you know, that around 14% of the population of England are black or South Asian but less than 3% of people who have given blood in the last twelve months are from these communities.

Now a Bradford-based charity is on a relentless mission to change the lack of Asian blood donors and has partnered up with NHS Blood & Transplant services for ‘Sewa Day.’

Coming together to raise awareness of the shortage of Asian blood types donating blood, they hope to encourage more people to get involved taking up regular donation when possible.

The number of patients from South Asian communities on the transplant waiting list are exceptionally high, yet are hugely under-represented on NHS Organ Donor Register.

Speaking to Asian Express, Theo Clarke, National BAME (Black, Asian, Minority, Ethnic) Manager at NHS Blood and Transplant said: “We are very grateful that Sewa Day is working with us to help save more lives.

“South Asian patients wait longer than white patients for transplants as there are not enough suitable organs available.

“By joining the NHS Organ Donor Register and sharing your decision with your families you could save up to nine lives, if you are able to donate after your death. By becoming a blood donor, you can save up to three lives every time you donate.”

In the ancient Indian language of Sanskrit, Sewa means selfless service and on Sewa Day  individuals, voluntary groups, schools, and companies are encouraged to commit their time to doing a good deed with an aim of making a positive difference to someone else’s happiness, quality of life and prosperity.

Bharat Vadukul, Sewa Day Chairman told Asian Express: “When people from South Asian communities find out they may have rare blood and tissue types, I’m sure they will want to do everything they can to help save lives.

“There are many South Asian people who actively donate blood but we need more. I urge people to find out if they can donate blood, register online at www.organdonation.nhs.uk and to join the NHS Organ Donor Register. One day it could be someone you love who needs an organ transplant or a blood transfusion.”

In order to give people more information Sewa Day are running two Donor Drive events happening soon, the first on 30th March and then a second event on 30th April.


Sewa Day Donor Drive

30th March at the Bradford Blood donor Centre 11 Rawson Street, Bradford BD1 3SH

30th April at Shelf Village Hall, HX3 7NT

You can also join the NHS Organ Donor Register or become a new blood donor by calling 0300 123 23 23.


 

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Blood brothers: Rare blood disease is conquered through one sibling’s selfless act

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BRAVE: The Patel brothers have been incredibly brave and now Yahya (on the right) has a better quality of life

BRAVE: The Patel brothers have been incredibly brave and now Yahya (on the right) has a better quality of life

An 11-year-old from Bolton has been hailed a ‘hero’ by his father after successfully donating his bone marrow to his younger brother.

Yahya Patel, six, returned home from hospital this week after many months of recovery at the Royal Manchester Children’s Surgery.

The brave youngster was born with a rare condition called Diamond Blackfan Anaemia - which meant his bone marrow fails to make enough red blood cells.

A transplant was the only solution to improve his quality of life.

The brothers’ father, Zayd, said: “We tried a few other treatments like steroids which worked for a little while, but then Yahya’s body stopped producing that.

“We decided to go down the bone marrow transplant route. My wife and I were tested but we weren’t a match.

“Our eldest son, Abdullah, was a 100 per cent match. We’d been discussing it for a few years. It’s a daunting thing to undergo a bone marrow transplant and watching your child go through chemotherapy. It had to be his decision.”

After a successful transplant, Yahya is now recovering with his family at their Great Lever home and even managed to attend the end of term party at his school, Pikes Lane Primary in Deane.

However, to be a donor is not a painless process, and Zayd said that Abdullah had to undergo a psychological evaluation in order to make an informed decision.

Zayd said: “I was immensely proud of him. It’s such a selfless thing to do. Abdullah’s a bright kid so we discussed it with him last year and told him the options.

“We couldn’t force it on him, it’d be totally unfair. He read all about it and researched about transplants and he came to his own decision that it was something that he wanted to do.”

HERO: Abdullah (on the left) has made his father ‘incredibly proud’ after becoming a bone marrow donor for his brother

HERO: Abdullah (on the left) has made his father ‘incredibly proud’ after becoming a bone marrow donor for his brother

Yahya has now been home for two months and is ‘doing well’ - whilst Abudllah has made a full recovery from his own operation.

“The transplant is working perfectly at the moment,” Zayd said, “even though it could go wrong at any time. We don’t like to think like that though, we’re remaining positive.”

He added: “Yahya still has a tube in his nose because he doesn’t eat as much as he should be doing. However, the transplant will allow him to lead a normal life, there will be less hospital visits and he won’t need blood transfusions.”

The family are now raising money for the Royal Manchester Children’s Hospital to say thank you to the ‘fantastic’ team for the treatment and care they have given to Yahya.

The youngster’s parents are also huge supporters of The Diamond Blackfan Anaemia Charity, which supports families of children with the rare illness.

Zayd added: “It made a big difference to us to speak to families who have gone through the same experience. The support we received from the group and the hospital was fantastic.”

To support the family’s fundraising drive visit https://www.justgiving.com/crowdfunding/Yahyasbmtjourney

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Young donors needed: Muslim initiative to give blood sees successful turnout

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SUCCESSFUL INITIATIVE: (Left to right) Ehsan Rangiha, Chairman, Islamic Unity Society; Aimen Al Diwani, Coordinator, Imam Hussain Blood Donation Campaign; Darren Bowen, Head of Region at NHS Blood and Transplant; Mike Stredder, Director of Blood Donation at NHS Blood and Transplant

SUCCESSFUL INITIATIVE: (Left to right) Ehsan Rangiha, Chairman, Islamic Unity Society; Aimen Al Diwani, Coordinator, Imam Hussain Blood Donation Campaign; Darren Bowen, Head of Region at NHS Blood and Transplant; Mike Stredder, Director of Blood Donation at NHS Blood and Transplant

British Muslims across London joined others on 11th July to give blood under the Imam Hussain Blood Donation Campaign (IHBDC) - the largest Muslim initiative of its kind in the UK.

The event, held at the Islamic Centre of England in Maida Vale, marked the 10th anniversary of the campaign and the launch of an official partnership between the IHBDC and NHS Blood and Transplant (NHSBT).

NHSBT needs just under 200,000 new donors to attend a session to give blood this year and there is a particular need to attract more younger donors - from 17 years old - and people from South Asian, Arab and black communities.

In general, as long as you are fit and healthy, weigh over 7 stone 12 lbs (50kg) and are aged between 17 and 66 (up to 70 if you have given blood before) you should be able to give blood. If you are over 70, you need to have given blood in the last two years to continue donating.

Currently, only one per cent of people who have given blood in England in the last 12 months have come from black communities and only two per cent come from South Asian or mixed race communities. Less than one per cent are from the Arab community.

People from South Asian, Arab and black communities are more likely to have rarer blood types and conditions, like Thalassaemia or Sickle Cell Disease respectively, which require regular blood transfusions.

People who require regular blood transfusions need blood from donors with a similar ethnic background to provide the best match and better outcomes in the long term.  

In 2015 alone, the IHBDC delivered over 48 dedicated blood donation drives, resulting in the collection of almost 600 units of blood.

GIVING BLOOD: (Left to right) Mike Stredder, Director of Blood Donation at NHS Blood and Transplant, Ehsan Rangiha, Chairman, Islamic Unity Society

GIVING BLOOD: (Left to right) Mike Stredder, Director of Blood Donation at NHS Blood and Transplant, Ehsan Rangiha, Chairman, Islamic Unity Society

As each unit of blood collected has the potential to save or improve up to three lives, in total the donors could have saved or improved the lives of up to 1,800 people in just one year of the 10 year campaign.

Commenting on the achievement, Mike Stredder, Director of Blood Donation at NHSBT said: “The Islamic Unity Society has done a magnificent job helping us to raise awareness of blood donation. Working together we have recruited hundreds of new donors and we look forward to this partnership continuing to grow. We urgently need more donors from black and South Asian communities and would encourage anyone considering blood donation to book an appointment and help save lives.”

Growing year on year, the campaign which began as a single drive in Manchester, now collects blood up and down the UK, throughout the year, with the help of a network of volunteers made up predominantly of students and young professionals.  

Ehsan Rangiha, IUS Chairman added: “The Imam Hussain Blood Donation Campaign has been doing a fantastic job over the past ten years, during which it has saved many lives.

“The initiative is inspired by the teachings of Islam which dignifies and honours human life, and commands Muslims to do everything to respect and preserve it.

“The NHSBT has been instrumental in giving us the platform to carry out this important work, and this official partnership further strengthens our commitment to supporting blood donation in the UK.

“Finally, I would like to thank Islamic Centre of England for hosting today’s blood drive, and all of those involved from both organisations for their tireless efforts to improve and save the lives of others.

To find out more and book an appointment visit www.blood.co.uk or call 0300 123 23 23

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