Bone Marrow - How can I help?
Friday 13th June
For many blood cancer patients, a stem cell or bone marrow transplant can represent their final hope. Paul Clark reports on the urgent need for more donors.
In the 20 minutes it takes to read this article, someone in the UK will be diagnosed with blood cancer. The blood stem cells, which are found in the bone marrow of large bones, become affected and this results in lowered immunity. The body loses its ability to fight infection, carry oxygen, remove waste and stop bleeding.
Each year 1,800 people in the UK are in desperate need of a stem cell transplant to replace these damaged blood cells and increase their chances of survival. Some will be lucky enough to find a donor within their families, but three in five patients are forced to look for an unrelated match through charities such as Anthony Nolan.
“For someone with blood cancer, a stem cell transplant is usually their last chance of survival,” explains Ann O’Leary, head of register development at Anthony Nolan. “Anthony Nolan aims to recruit young healthy people to the donor register – selfless people who may one day go on to save the life of a stranger with blood cancer.”
Genetics are complex, so finding a good match is a matter of chance. It is likely, though, that a donor will be of a similar background to the patient. The larger the number and more varied the background of donors available, the better it is for patients.
This is where ethnicity can dramatically alter an individual’s chances of survival. Whereas white northern Europeans have a 90 percent chance of finding a suitable match, the odds for black, Asian and other non-white minorities are slashed to just 40 percent. At present, just four percent of registered potential donors are Asian and this under-representation is precisely what increases the risk of death among minority ethnic communities.
The donation process
There has been a degree of confusion over stem cell and bone marrow donation. The truth is that the registration process is very straightforward and 90 percent of donations will involve blood stem cells. The donation procedure itself is very similar to giving blood and takes place as an outpatient appointment. Modern techniques mean that the donor can resume normal activities within 24 hours and, at worst, may suffer flu-like symptoms.
A bone marrow donation is far less common and requires a two-night stay in hospital. Under general anaesthetic, the cells are extracted from the pelvic bones using just a needle and syringe. With either procedure, the stem cells and bone marrow replace themselves within 21 days.
Donors often comment on how little they have to give in order to save another life. Anyone of us might be the only person in the world who is a match for a patient with a life-threatening illness. Anthony Nolan seeks to recruit young donors – in particular, men aged 16 to 30, as this demographic is under-represented. Doctors are most likely to choose younger donors and research supports the view that
transplants have better outcomes when the donor is younger, though if you are below the age of 50, you can still register with the NHS. Once on either register, you can donate until you reach the age of 60.
To register with Anthony Nolan, go to http://www.anthonynolan.org/ and fill in a simple form. The charity will send you a saliva kit in the post which you spit into and return in a prepaid envelope. Anthony Nolan work out your tissue type which they put onto the register. You will only be called on to donate if you have a similar tissue-type to a specific patient in need of a stem cell transplant. It is worth noting that each and every individual on the register could be called upon to donate at any time over a period of many years. This could be the most rewarding thing you ever do – helping to prevent a needless loss of life.
In memory of a high flier
As a child, Jaskomal Sher-Gill was a talented dancer and singer, described by her family as “the perfect daughter”. By the age of 21, she had blossomed into a bright and beautiful young woman with the world at her feet.
Having attained four straight As at A-level, Jaskomal moved from the family home in Hitchin, in Hertfordshire, to become a star mathematics student at University College London. Jaskomal’s dream was to enter the high-flying world of investment banking and she had already fought off stiff competition to land a prestigious ten-week placement at Barclays Capital. Her family could not have felt more proud.
Then, in August 2011, this seemingly healthy young woman fell ill. After an initial diagnosis of tuberculosis, a blood test revealed that Jaskomal had blood cancer. As a young Asian, her chances of finding a stem cell donor were much lower than if she had been white. Two years later, at the age of just 23, a fatal infection cut short her fight against blood cancer. Jaskomal’s death, in January 2013, highlights the need for more non-white donors to come forward to prevent further unnecessary deaths.
Her brother Joban “didn’t want to feel her time on Earth was a waste” and, in the months following her sad loss, founded The Jaskomal Foundation, with the clear aim of raising awareness of the critical shortage of stem cell donors in non-white communities across the UK. Within its first year, the foundation has added some 3,000 donors to the register and runs regular recruitment events, often held in Sikh temples.
The foundation teamed up with other blood cancer charities to campaign on behalf of Gaurav Bains, a two-year-old boy from the West Midlands with a rare blood disorder. Without a bone marrow transplant, he was at risk of developing an aggressive form of childhood leukaemia and, in November, a donor match was found.
His father Sunny’s blog describes the drive to reach out to the Asian community:
Anthony Nolan www.anthonynolan.org
Tel: 0303 303 0303
British Bone Marrow Registry www.nhsbt.nhs.uk/bonemarrow
Tel: 0300 123 2323
Delete Blood Cancer www.deletebloodcancer.org.uk
Tel: 020 3176 7620
The Jaskomal Foundation www.jaskomalfoundation.org
Tel: 0131 667 2849 (Linsay Given Black)
Source: This article first appeared in benhealth, issue 26 (spring 2014).