My name is Jessica, and I have Sickle Cell Anaemia. Sickle Cell is categorised as a group of genetic blood disorders that cause red blood cells to become ‘sickle’ shaped. Their shape makes it extremely hard for them to move around the body and they can stick together, blocking blood vessels. The blockages can be caused by prolonged exposure to cold temperatures, infection or dehydration. These blockages then lead to episodes of severe pain, known as a Sickle Cell Crisis, and long term can cause significant organ damage and puts patients at a higher risk of strokes and heart attacks. Anyone can have sickle cell, but it most commonly affects people from black African or black Caribbean backgrounds.
Despite Sickle Cell Anaemia being the most inherited genetic condition in the UK, affecting approximately 15,000 people, little is known about this debilitating condition and the impact it has on people.
I have type HbSS, which is the most severe type of Sickle Cell, and so my life revolves around the careful management of my condition. Each day, I have to consider; what’s the weather like? How cold will this room be? How far do I have to walk to get to where I need to be? Is there parking nearby? I had to shield during the peak of the COVID-19 pandemic as Sickle Cell was added to the list of ‘extremely clinically vulnerable’ conditions. But I am happy to say with the support of a great medical team, my husband, family and friends, I lead a relatively normal life most of the time.
One form of treatment for the symptoms of Sickle Cell is blood transfusions. Sickle Cells aren’t able to carry enough oxygen around the body, and have a lifespan of 10-20 days, compared to 120 days for a ‘normal’ red blood cell. Blood transfusions help provide oxygenated blood to the recipient, which relieves symptoms significantly. Some patients require a blood transfusion every 4-6 weeks; luckily for me, I don’t need them as often as that, but many of my fellow sickle cell patients depend on blood transfusions to stay alive.
When receiving a blood transfusion, it’s not only the blood type that matters. Usually, when you require a single blood transfusion, for example following an operation, you can usually be given blood based only on your blood type.
But with Sickle Cell, you require multiple blood transfusions, so the blood you receive needs to be more extensively matched. Subtypes of all the blood group systems are taken into consideration, when determining the most suitable blood to give to the patient.
For Sickle Cell patients, the Ro subtype of donor blood is incredibly important. The Ro subtype is simply blood with a certain combination of genes. Blood that contains this subtype is the most appropriate for patients with Sickle Cell to receive, and so the demand for blood with the Ro subtype is steadily increasing.
What makes donors with the Ro subtype special, is the fact that only 2% of current blood donors have it. You are 10 times more likely to have the Ro subtype if you are of black African or black Caribbean heritage, compared to someone of white heritage.
That’s one of the reasons why we need more black people to become blood donors. Overall, Black and Asian people only make up 3% of people on the Blood Donation register, and this is something that desperately needs to change if we are to keep up with the demand, and help people stay alive.
Donating blood is a simple, painless (well, a sharp scratch but that’s it!) and quick process, which is unlikely to have any real impact on the day of the person giving blood. You get to sit down, have a nice drink and some biscuits, then go back to your life. But for people like me, it is life changing. It has saved my life and allowed me to give birth to my daughter. For me, and thousands of others, it helps us to lead a relatively normal life and keep our condition under control to allow us to work, school, university and look after our children. Without the gift of blood donation, I don’t know if I would even be here today to write this blog.
This Black History Month, I want to encourage Black people to sign up to the Blood Donation register. It takes only minutes, but those few minutes will save countless lives.
Sign up today at www.blood.co.uk.