Give blood, spread love to people with Sickle Cell Disease

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 red blood cells.

16-year-old T’sharne just wants people “to understand that sickle cell is athing — that it exists,” and to understand the impact it can have upon his day-to-day life. T’sharne has the most serious form of SCD, known as sickle cell anaemia.

Due to the geographical origins of SCD, most people affected are of African or Caribbean backgrounds, although anyone can have it — regardless of their ethnicity.

Understanding the condition

SCD is an inherited condition. If both parents carry the sickle cell gene, there is a one in four chance of their child having sickle cell. It qualifies as a rare genetic illness (defined by the European Union as one that affects fewer than five people in every 10,000), and its impact on an individual’s life — and their family and friends — is significant.

T’sharne’s mother Clementina, a teacher and campaigner, says that finding out T’sharne had sickle cell was initially difficult for her to accept and she felt guilty for ‘giving’ him the condition. “Despite having sickle cell in our family, neither I nor my husband were aware that we had the sickle cell trait or of the risks involved when having a child.”

Symptoms of sickle cell disorder

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 change 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 small blood vessels.

People with sickle cell are at risk of several 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; he now receives regular blood transfusions every four weeks via a process called Exchange Blood Transfusions (EBT). It is a highly successful treatment where up to a third of a patient’s blood is replaced with blood from healthy donors.

SCD is an inherited condition.

Importance of ethnically matched blood

Since starting on regular blood transfusions in 2018, T’sharne has had no emergency admissions to the hospital — a remarkable achievement given he had previously missed a whole school term due to his illness.

Clementina and T’sharne support the Sickle Cell Society’s Give Blood, Spread Love project, which raises awareness of the need for more African and Caribbean heritage blood donors. Transfused blood needs to be ethnically matched to avoid further health complications, and there is an ongoing challenge to encourage more Black and mixed race donors to come forward.

Since joining the project, Clementina has become a regular blood donor (most people with the 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 has become a powerful advocate for blood donation, encouraging her friends, family and colleagues to donate.

How important is blood donation?

Clementina and T’sharne agree that more awareness and understanding of sickle cell is needed to support those with SCD and their families. While being a strong advocate for a holistic approach to care, they also believe that more funding is needed to increase the range and accessibility of treatments available for sickle cell, including making the only current cure — a stem cell transplant — more widely available. The Sickle Cell Society needs people from all communities to help raise awareness of sickle cell and the lifesaving impact of blood donation on those affected.