Today’s blog is by Tracy Williams, Blood Donation Lead at the Sickle Cell Society.
16-year-old T’sharne, just wants people, “to understand that sickle cell is a thing, that it exists,” and to appreciate the impact it can have upon his day-to day life.
T’sharne is one of the 15,000 people in the UK living with a sickle cell disorder (SCD), the term used to describe a range of inherited blood disorders affecting the haemoglobin in the red blood cells. T’sharne has the most serious form of SCD, known as sickle cell anaemia.
For World Sickle Cell Day on Sunday 19 June, the Sickle Cell Society is asking people to wear red to raise awareness of the disorder, and to show their support for this serious, and often under recognised condition.
Sickle cell disorder is inherited. If both parents carry the sickle cell gene, there is a one in four chance of their child having sickle cell. Although it qualifies as a rare genetic illness, (defined by the European Union as one that affects fewer than 5 people in every 10,000), it’s impact on individual’s lives, and that of their family and friends, can be significant. Around 90 people in Bristol are under hospital care for a sickle cell disorder.
T’sharne’s mum, Clementina, a teacher and campaigner, says that finding out T’sharne had sickle cell was initially difficult to accept, and that she felt guilty for ‘giving’ T’sharne the condition. “Despite having sickle cell in our family, neither me or my husband, were aware that we had the sickle cell trait, or of the risks involved when having a child.” (People concerned that they may be a sickle cell carrier, can ask their GP for a simple blood test which will identify if the gene is present.)
The main symptoms of sickle cell disorder are anaemia and episodes of severe pain, known as a sickle cell crisis. Pain occurs when red blood cells mutate from a round, doughnut-like, shape to sickle-shaped, inhibiting the flow of oxygen around the body and causing the cells to stick together, resulting in blockages in the small blood vessels. People with sickle cell are at risk of a range of complications including leg ulcers, sight loss, and a serious condition called acute chest syndrome, when blood flow to the lungs is blocked.
It was a chest crisis that first saw T’sharne receive donated blood at only 10 years old; T’sharne now receives regular blood transfusions every 4 weeks, via a process called Automated Exchange Blood Transfusion. This is a highly successful treatment where a machine is used to remove up to a third of a patient’s blood and replace it with blood from healthy donors. Since starting on regular blood transfusions in 2018, T’sharne has had no emergency admissions to hospital, a remarkable achievement given he had previously missed a whole school term due to his illness.
Importance of ethnically matched blood
Anyone can have SCD, however, due to the geographical origins of sickle cell disorder, most people affected are of African or Caribbean backgrounds. To ensure that the treatment T’sharne, and many others rely on, can continue without delays, we need many more Black and Mixed Race people to regularly give blood. Transfused blood needs to be ethnically matched to avoid further health complications, and there is an ongoing challenge to encourage more people from these backgrounds to come forward. The Sickle Cell Society’s Give Blood, Spread Love, project raises awareness of the need for more people with African or Caribbean heritage to donate blood, and involves volunteers, such as Clementina, to help us share our message. Since joining us, Clementina has become a regular blood donor (most people with sickle cell trait can donate blood), and has found out she has a rare subtype of blood, known as Ro, which is 10 times more common in people with African and Caribbean heritage, and is especially needed to provide matched blood to people with sickle cell. Clementina, only half- jokingly, now describes giving blood as her ‘favourite pastime’ and has become a powerful advocate for blood donation.
The Sickle Cell Society needs people from all communities to help us raise awareness of sickle cell, and of the lifesaving impact of blood donation on those affected. We are delighted that Bristol’s City Hall will be lit up to mark World Sickle Cell Day on Sunday 19 June, and hope you will join us in showing your support for those living with a sickle cell disorder.
Show your support
People of Black African or Caribbean heritage can register to be a blood donor here.
Find out more about the need for Black and Mixed Race blood donors here.
Read our recent report on the serious health inequalities that affect people with sickle cell.