For Sickle Cell Awareness Month this September, the NHS is asking people to check whether they have the Sickle Cell trait and to give blood to support those living with Sickle Cell Disorder.
Sickle Cell is a serious, long-term health condition that affects around 17,500 people in the UK. Anyone can be born with Sickle Cell, but it is most common amongst people of Black African and Caribbean heritage. Sickle Cell Disorder occurs when a gene mutation causes red blood cells to change into an abnormal shape, leading to a wide-range of health problems.
When damaged red blood cells block vessels and restrict oxygen supply it can result in a Sickle Cell crisis. This can cause severe pain and needs immediate pain relief and treatment at hospital to prevent complications such as organ failure, which can be fatal.
Someone can only be born with the condition if both parents carry the trait for Sickle Cell. When both parents carry the trait, there is an increased chance their children will have Sickle Cell or also carry the trait.
Anyone can ask their GP practice or Sickle Cell and Thalassaemia centre if they offer a free blood test to see if they are a carrier of the Sickle Cell Disorder trait.
The importance of understanding whether you have the Sickle Cell trait:
Stephanie, from north London, was diagnosed with Sickle Cell at around six-weeks-old. She says finding out if you have the trait can help you make the best possible choices about your health: “By having a simple blood test, you can know if you carry the gene.
“This test can be done at any time, for anyone. Having this information allows you to know whether you carry the gene, ensuring that you have the information to make an informed choice.
“If you want to reduce the chances of having a baby born with the condition, it’s best to have testing done before making reproductive decisions.” Oyesola, who was born in Nigeria and now lives in Nottingham, was diagnosed with Sickle Cell Disorder at two-years-old and began experiencing complications aged 32.
She says: “It’s important to know your genotype and find out if you have the trait so that hopefully we can reduce the scourge of Sickle Cell. That way, couples with Sickle Cell can make informed, educated decisions.
“Sickle Cell is no longer a death sentence. Please speak with your GP practice or Sickle Cell and Thalassaemia centre about a test and they can arrange that for you. It's just a tiny prick of the needle, but the knowledge that comes with it is reassuring."
Dr Layan Allawi, Haematology Registrar at West Hertfordshire Teaching Hospitals NHS Trust and Sickle Cell and Thalassaemia Clinical Fellow for NHS England’s Healthcare Inequalities Improvement Programme, says: “Sickle Cell Disorder has significant physical and mental implications.
“With its rising incidence, it is crucial to improve general awareness, especially before starting a family. A simple blood test can reveal whether you carry the gene and the chances of having a child with the condition.”
Why giving blood can save lives:
Blood transfusions can be lifesaving for Sickle Cell patients as they add healthier red blood cells into their bodies. Donors from all backgrounds are needed as Sickle Cell patients often require transfusions using blood that is closely matched to their own.
This makes it less likely they will have a severe reaction. Currently only 1% of all donors in the UK are from Black African and Black Caribbean heritage.
Stephanie says regular blood transfusions have transformed her life: “I have been having blood transfusions since I was 10.
“Having regular blood transfusions every six weeks is not easy. Each transfusion is different, and it’s not without its drawbacks, but I know that I most likely wouldn’t be here if it wasn’t for that treatment method.”
Stephanie adds that it’s vital that more people come forward to give blood: “The kindness of strangers has allowed me to live. We need more blood donors, please know that your blood does go to real people, and you are definitely saving lives - I am a living testament of that.”
Oyesola (pic) says that more blood donors need come forward to help people like her: "I have had so many emergency situations where I needed blood and having transfusions has helped me.
“We know that the best blood to get is one that is closely matched, so we need our community to stand up and donate blood. Please register to be a blood donor."
Dr Rossby Awadzi, GP Registrar London Northwest University Trust, says: “Giving blood is one of the most powerful acts of love you can offer your community.
“For people with Sickle Cell, it is not just helpful, it is lifesaving. It’s not just medicine in a bag. It is culture, it is solidarity, it is life passed from one body to another.”
Anyone with symptoms of a Sickle Cell crisis should seek urgent medical attention via A&E, calling 999 or by visiting their local haematology unit. To find out how to donate blood visit: www.blood.co.uk.
