Sickle cell desperately patients need 'ethnically matched' Black blood donors

Black people aged 17-66 are being encouraged to register to donate blood in memory of Evan Nathan Smith; a 21-year-old who died after experiencing a sickle cell crisis and not receiving a blood transfusion in time.

The coroner has said that a timely blood transfusion could have saved Evan’s life. He was also denied oxygen and even forced to call 999 from his hospital bed because he was in such distress.

The coroner also ruled that Evan’s treatment was made more difficult ‘by a lack of understanding of sickle cell disease in the medical and nursing staff looking after Mr Smith.’

Sickle cell is the fastest growing genetic condition in the UK, with 14,000 existing patients and 300 babies born with sickle cell trait each year.

Every month, NHS Blood and Transplant need more than 1,300 new Black donors to provide essential treatment for the 14,000 patients living with sickle cell disease, but also to provide life-saving blood for use in emergencies, childbirth, during surgery, treatment of cancer and for a range of medical conditions.

While people from the same ethnic background are more likely to have the same blood type, the shortage of Black donors makes it harder to find the best ethnically matched blood for Black patients.

Alonzo, 36, from Lambeth, knows all too well how precious well-matched blood can be after being rushed into intensive care following a sickle cell crisis and mini stroke in 2011.

He was told he needed 12 units of blood to stay alive. There were only 12 units of blood in the entire country that were a match for him.

‘Amazingly, units of that precious B positive were blue lighted from South London, Birmingham, Manchester, Leicester and elsewhere that ultimately saved my life,’ says Alonzo.

Alonzo has developed antibodies which means his blood type is incredibly rare. The transfusions he receives need to be exactly matched to his own. Ethnically matched blood provides the best treatment for this. 

‘There are very few donors that match my blood type but those that do are likely to be the same ethnicity as myself,’ he says. ‘So, if it wasn’t for Black blood donors, I wouldn’t be here today.’

Diagnosed at birth, Alonzo’s condition has gradually worsened over the years. He’s now in crisis every day due to Avascular Necrosis.

‘My joints are constantly in pain, but it fluctuates in intensity,’ says Alonzo. ‘When you’ve had as many crises as I have, it damages the tissue. It gets to the point where the pain is a permanent, and you learn how to cope with that.’

To manage his condition, Alonzo undergoes red cell exchange treatment every four weeks, where he receives 7-12 units of blood each time. 

‘Since my episode of strokes in 2011 I’ve needed regular exchange transfusions. They help me manage my condition a lot more easily,’ he says.

The new donation campaign ‘United by Blood: In memory of Evan Nathan Smith’, supported by NHS Blood and Transplant, is a coalition of Black organisations working together to raise awareness of blood disorders and blood donation: ACLT (African Caribbean Leukaemia Trust), Black Mums Upfront and CellFeForLife.

Carina White, Black Mums Upfront co-founder says: ‘Bringing these three organisations together to deliver this campaign and rally the community together is an example of how communities are stronger together. Evan didn’t need to die, what he needed was a blood transfusion and tragically that wasn’t afforded to him.

‘Sickle cell is a disease that affected Evan and also predominantly affects the Black community, what better way to honour his life and show Black Lives do Matter, than by donating blood to ensure other sickle cell patients have access to blood when they need it.’

Where to find a donation session

United by Blood donation sessions will take place at the below locations:

Saturday June 19th

  • London, Westfield Shepherd’s Bush Donor Centre
  • London, Westfield Stratford City Donor Centre
  • London, West End Blood Donor Centre
  • Manchester, Norfolk House Donor Centre
  • Birmingham Blood Donor Centre, New Street
  • Bristol Blood Donor Centre

Sunday June 20th

  • London, Tottenham Hotspur (Football) Stadium
  • London, Lambeth Town Hall, Brixton

The blood donor drive will take place on Saturday June 19th – which is World Sickle Cell Day – and Sunday June 20th.

To register to donate blood and attend the donation sessions, you can call the priority booking line on 0300 303 2737. Alternatively, donors can visit the United By Blood website to book an appointment.

‘We want our work through this campaign to contribute towards helping to increase the overall number of donors from ethnic minorities who donate blood regularly in the UK (which is currently at 1%),’ says Orin Lewis OBE, ACLT co-founder and CEO.

‘Moving blood donation to reach a level where there is enough ethnically matched blood available for those who so desperately need it today and, in the future.’

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