UK Asians hunt for bone marrow donors

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By Martin Poyntz-Roberts BBC Asian Network Dean has a life expectancy of just a few years

Dean Sheik was born with a rare blood disease and his only option is a bone marrow transplant.

Without this operation Dean, who is seven, could die within the next few years - but his chances of finding a donor in the United Kingdom are slim.

If you are white and need a bone marrow transplant, you have a 75% chance of finding a matching donor in the UK.

If you are Asian, as Dean is, then you have just a 25% chance of finding a donor with the right tissue type.

Figures from the Anthony Nolan Trust, a leading bone marrow charity, reveal that of the 350,000 registered bone marrow donors in the UK, just 3% are Asian.

A major drive is currently under way to attract donors from black and ethnic minorities in the UK.

And there are hopes that an Indian register of bone marrow donors, currently being set up, could make a big difference.

Side effects

Dean's mother, Farah Iqbal, has been been searching for a bone marrow transplant for her son for the past few years.

We naively thought it would be easy to find a donor, a straightforward operation Asma Meer, whose son died

Farah believes there are a number of reasons why there is a shortage of Asian donors in the UK.

There has been a lack of awareness in the Asian community about what is involved in the procedure and Farah also believes that some Asian families lack selflessness and are too wrapped up in their own family life to come forward to join the register and help other people.

Meanwhile for Dean Sheikh the clock is ticking.

Sanjeev Walia was diagnosed with leukaemia in January 2005. He was lucky and within three months a donor match was found.

After a successful transplant Sanjeev set out on the road to recovery, but he is still suffering side effects of his operation.

He thinks as many people as possible should be told about the vital role they might play if they joined the donor register, and the earlier in life the better.

"Maybe tell kids at school - when you're young it stays with you. They don't know. It would help a lot."

Asma Meer's son Ibrahim was also in need of a bone marrow transplant after being born with a rare illness.

For Asma and her family no match was found for Ibrahim. He died six months ago and would have been alive today had a donor been found.

"We naively thought it would be easy to find a donor, a straightforward operation. We thought people would come forward in their hundreds - that didn't happen," she said.

UK campaign

The African and Caribbean Leukaemia Trust (ACLT) was set up by Beverley De Gale and Orin Lewis.

The procedure is relatively painless for donors, say experts

Their son, Daniel, was diagnosed with leukaemia in 1993.

It was only when they began to search for a bone marrow donor that they discovered how few donors from ethnic minorities were on the register.

Daniel had a successful transplant in June 1999, but died last week from an unrelated illness.

It is thought that there is a general lack of awareness amongst potential donors who may not realise how easy it is not only to register as a donor, but to actually donate.

The Anthony Nolan Trust and the ACLT are now campaigning for donors from ethnic minorities to come forward.

Azra Iqbal, the donor recruitment manager for ethnic minorities at the Anthony Nolan Trust, says: "It's a culture thing in the South Asian community. They don't associate hospitals with doing something good, they associate them with illness."

Indian register

The lack of Asian donors has led to the medical director of the Anthony Nolan Trust to suggest looking further afield and recruiting bone marrow donors in India.

This is a great opportunity to not only help the population of India, but also the rest of the world Dr Kajaksha Ghosh

India has a population of around 1.3 billion people. If just a fraction of this population signed up to an international register it would make a considerable difference.

"We do need to collect from ethnic minorities in the UK, but much more we do need to collect donors from countries where they are not ethnic minorities," Professor John Goldman said.

For the past few years Prof Goldman has been encouraging haematologists in India to start a register of volunteer donors. Currently a network of registers is focusing on three cities: Delhi, Bangalore and Mumbai (Bombay).

The man behind the register in Mumbai is Dr Kajaksha Ghosh. He said that initially the plan for India was to concentrate on the larger cities.

"There are 25 million people living in Mumbai. It is like a mini-India. The next step will be to spread the register to the districts and towns.

"One fifth of the world's humanity lives in India and this is a great opportunity to not only help the population of India, but also the rest of the world."

Prof Goldman has big ambitions for the Indian register. He believes that they need to start with a base of a million people: a small percentage of the population.

It will take about five years for the Indian register to be fully functioning and until that time, many black and Asian leukaemia sufferers in the UK continue to wait hopefully for a suitable bone marrow donor.

<i>The full radio report can be heard on the BBC Asian Network on 20 October at 1830BST (1730GMT).</i>