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| Lara's legacy: Widening the search for a 'genetic twin' | Lara's legacy: Widening the search for a 'genetic twin' |
| (35 minutes later) | |
| A drive to find a stem cell donor for a mixed-race student has been successful - but what impact will it have for others waiting for a "genetic twin" to save their life? | A drive to find a stem cell donor for a mixed-race student has been successful - but what impact will it have for others waiting for a "genetic twin" to save their life? |
| Lara Casalotti, 24, is part-Chinese, part-Thai and part-Italian. | Lara Casalotti, 24, is part-Chinese, part-Thai and part-Italian. |
| People who are black, Asian or mixed-race are far less likely to find a match than a white northern European, so a celebrity-backed viral campaign (Match4Lara) was started by the Casalotti family. | People who are black, Asian or mixed-race are far less likely to find a match than a white northern European, so a celebrity-backed viral campaign (Match4Lara) was started by the Casalotti family. |
| Within weeks, a match was found. But perhaps more importantly, people who turned out not to be a match signed up to the register too. | Within weeks, a match was found. But perhaps more importantly, people who turned out not to be a match signed up to the register too. |
| Is this significant? | Is this significant? |
| Since the beginning of the Match4Lara campaign more than 15,600 people have joined the Anthony Nolan register. | Since the beginning of the Match4Lara campaign more than 15,600 people have joined the Anthony Nolan register. |
| This compares to 4,135 during the same period last year - a 277% overall increase. | This compares to 4,135 during the same period last year - a 277% overall increase. |
| The has also been a sharp increase of black, Asian and mixed-race donors signing up during this period - 684% higher than the same period last year. | The has also been a sharp increase of black, Asian and mixed-race donors signing up during this period - 684% higher than the same period last year. |
| How difficult is it to find a match? | How difficult is it to find a match? |
| According to Jack Wilson at Anthony Nolan, a complete match with a stranger is "like gold dust". | According to Jack Wilson at Anthony Nolan, a complete match with a stranger is "like gold dust". |
| "It's incredible to think there could be someone on the register who is essentially your genetic twin," he said. | "It's incredible to think there could be someone on the register who is essentially your genetic twin," he said. |
| "It doesn't mean they have exactly the same background or heritage as you - for example Lara's match may have been someone part-Chinese, part-Thai and part-Spanish. But it's really special and personal thing to have a match." | "It doesn't mean they have exactly the same background or heritage as you - for example Lara's match may have been someone part-Chinese, part-Thai and part-Spanish. But it's really special and personal thing to have a match." |
| Currently, about 60% of patients find a perfect match - often with a sibling - and while partial matches can be considered they are not as successful. | Currently, about 60% of patients find a perfect match - often with a sibling - and while partial matches can be considered they are not as successful. |
| But that 60% drops to just 20% when the patient is of black, Asian or mixed ethnicity. | But that 60% drops to just 20% when the patient is of black, Asian or mixed ethnicity. |
| There are a few potential reasons for this - the vast majority of donors registered are white, northern Europeans, so matching stem cells simply cannot be found. | There are a few potential reasons for this - the vast majority of donors registered are white, northern Europeans, so matching stem cells simply cannot be found. |
| According to NHS figures there are three times as many white people registered as all the black, Asian and mixed-race donors put together. | According to NHS figures there are three times as many white people registered as all the black, Asian and mixed-race donors put together. |
| Another reason for the difficulty is that a mixed heritage is likely to be more complex than one which is completely one race - which further narrows down potential matches. | Another reason for the difficulty is that a mixed heritage is likely to be more complex than one which is completely one race - which further narrows down potential matches. |
| Why do so few black, Asian and mixed-race people register? | Why do so few black, Asian and mixed-race people register? |
| In the words of Mr Wilson: "If we knew the answer to that, we could tackle it." | In the words of Mr Wilson: "If we knew the answer to that, we could tackle it." |
| But he suggested that in some ethnic groups there "may be more barriers" to signing up. | But he suggested that in some ethnic groups there "may be more barriers" to signing up. |
| "In some communities, older people are very influential and many people still have outdated information about the donation process, which may be off-putting. People don't seem to realise how very easy it is." | "In some communities, older people are very influential and many people still have outdated information about the donation process, which may be off-putting. People don't seem to realise how very easy it is." |
| He also suggested a general lack of awareness in all demographics. | He also suggested a general lack of awareness in all demographics. |
| "People think it will hurt, or they'll need time off work. They won't - it's just like donating blood but takes a little bit longer. Plus you can register all online and it's all completely free," he said. | "People think it will hurt, or they'll need time off work. They won't - it's just like donating blood but takes a little bit longer. Plus you can register all online and it's all completely free," he said. |
| What makes a match? | What makes a match? |
| Matching is based on human leukocyte anitgen (HLA) tissue type. HLA is an individual genetic characteristic inherited from each parent. | Matching is based on human leukocyte anitgen (HLA) tissue type. HLA is an individual genetic characteristic inherited from each parent. |
| It is similar to blood groups, but more diverse and complicated. | It is similar to blood groups, but more diverse and complicated. |
| HLA is made up of genes and to find a match, experts look at five key sites. Each of the sites has two alleles (types of genes) making 10 in total. | HLA is made up of genes and to find a match, experts look at five key sites. Each of the sites has two alleles (types of genes) making 10 in total. |
| The genes are compared to those of donors. If all 10 match then it is a 10/10 match. | The genes are compared to those of donors. If all 10 match then it is a 10/10 match. |
| When it comes to finding a match, the higher the better, because bodies need to recognise and accept the donor's stem cells. | When it comes to finding a match, the higher the better, because bodies need to recognise and accept the donor's stem cells. |
| If the genes do not match, the body will treat them as intruders and reject them. | If the genes do not match, the body will treat them as intruders and reject them. |
| Source: Anthony Nolan Trust | Source: Anthony Nolan Trust |
| What sort of impact will Lara's campaign have? | What sort of impact will Lara's campaign have? |
| According to the Anthony Nolan Trust, although it is too soon to see a direct impact from the surge in registries, in the coming months and years there will be "a massive" effect. | According to the Anthony Nolan Trust, although it is too soon to see a direct impact from the surge in registries, in the coming months and years there will be "a massive" effect. |
| "Any one of those people would be a match for someone in the future," said Mr Wilson. "And remember, you're not just saving the person who needs a transplant - in many ways you're saving their loved ones too. | "Any one of those people would be a match for someone in the future," said Mr Wilson. "And remember, you're not just saving the person who needs a transplant - in many ways you're saving their loved ones too. |
| "The odds are, if you register, you won't be called - it's quite rare. But 2,000 people need a transplant every year - and you could be their lifeline, which is quite incredible really." | "The odds are, if you register, you won't be called - it's quite rare. But 2,000 people need a transplant every year - and you could be their lifeline, which is quite incredible really." |
| Recruitment events organised by the Casalotti family which were scheduled for later this year will still go ahead, encouraging more mixed-race donors to sign up. | |
| If the trend continues, Lara's legacy could be more than simply her own recovery. | If the trend continues, Lara's legacy could be more than simply her own recovery. |