What is sickle cell disease? Condition explained, how to donate blood - why NHS is urging more Black donors

NHS Blood and Transplant (NHSBT) have issued an urgent call for more Black people to donate blood, as a record level of blood donations are now needed every day to treat people with sickle cell disease.

It said that there is more demand for care than ever before as sickle cell is the “fastest growing genetic condition in the UK”.

This is everything you need to know.

What is sickle cell disease?

The NHS explains that sickle cell disease is the name given to a “group of inherited health conditions that affect the red blood cells”, the most serious of which is sickle cell anaemia.

People with sickle cell disease produce unusually shaped red blood cells that can cause issues as they do not live as long as regular, healthy blood cells and can block blood vessels.

The NHS describes sickle cell disease as a “serious and lifelong health condition”, although treatment can help manage many of its symptoms.

The main symptoms of sickle cell disease include:

• Painful episodes called sickle cell crises, which can be very severe and last up to a week
• An increased risk of serious infections
• Anaemia, which is when red blood cells cannot carry enough oxygen around the body, which can cause tiredness and shortness of breath

Some people with the disease may also experience other problems, such as delayed growth, strokes and lung problems.

People who have been born with sickle cell disease tend to have issues from early childhood, although some children may have few symptoms and can go about their lives not knowing they have the condition.

Sickle cell disease is caused by a gene that affects how red blood cells develop - if both parents have this gene, then there’s a one in four chance of each child they have being born with sickle cell disease.

The NHS says that “the child’s parents often will not have sickle cell disease themselves and they’re only carriers of the sickle cell trait”.

Sickle cell disease is often detected during pregnancy, or soon after birth, through screenings and the newborn blood spot test.

Blood tests can be administered at any age to check for sickle cell disease, or to see if you’re a carrier of the gene that causes it.

How is sickle cell disease treated?

Those with sickle cell disease will need treatment throughout the course of their lifetime, which includes things like:

• Daily antibiotics and having regular vaccinations to reduce the chances of infection
• A medicine called hydroxycarbamide (hydroxyurea) to reduce symptoms
• Regular blood transfusions if symptoms continue or get worse, or there are signs of damage caused by sickle cell disease
• Emergency blood transfusion if severe anaemia develops 
• Painkillers like paracetamol or ibuprofen 
• Drinking plenty of fluids and staying warm to prevent painful episodes

The only cure for sickle cell disease is a stem cell or bone marrow transplant, however these procedures are not often done due to the potential risks involved.

Why are Black people being urged to donate blood?

Sickle cell disease is particularly common in people with African or Caribbean heritage and, according to the NHSBT, “ethnically matched blood provides the best treatment” for the condition, with record levels of blood donations now needed.

In the last five years, demand for blood to treat the disease has risen by around 67%, with the NHSBT stating that 250 donations are now needed every day in order to help those with sickle cell - in comparison to the 150 donations a day that was needed five years ago.

Dr Bola Owolabi, England’s director of healthcare inequalities improvement, said: “Sickle cell disproportionately affects people from a Black African or Black Caribbean background and these new figures show hospitals need more blood for people with sickle cell disease than ever before.

“I urge anyone from these communities who is able to give blood to step forward and help treat the thousands of people living with this painful hereditary condition.”

According to the NHSBT website, Black donors are “10 times more likely to have the Ro and B positive blood types urgently needed to treat the 15,000 people in the uK suffering from sickle cell disease”.

Around 55% of Black people have an Ro blood type, compared to the 2% of the wider population that has it, however, an NHSBT briefing note says that “there is not enough Ro blood available for sickle cell patients to meet hospital demand”.

How do I give blood?

If you want to donate blood, then you can register to become a blood donor on the NHSBT website.

To be eligible to donate blood, you’ll need to:

• Be generally fit and well
• Be aged between 17 and 65
• Weigh between 7st 12lb (50kg) and 25st (158kg)
• Have suitable veins (this will be checked before you donate)
• Meet all the donor eligibility requirements (this will also be checked before you donate)

You can’t donate blood if you:

• Have some types of cancer
• Have some heart conditions
• Have received blood, platelets, plasma or any other blood products after 1 January 1980
• Have tested positive for HIV
• Have had an organ transplant 
• Are a hepatitis B carrier
• Are a hepatitis C carrier
• Have injected non-prescribed drugs including body-building and injectable tanning agents - you may be able to give if a doctor prescribed the drugs 

There are other conditions and reasons that may mean you can’t donate - you can check out the NHSBT website to see the full list, or you can give them a call on 0300 123 2323.

You can find out where you can donate by checking out:

• The NHSBT website if you’re in England
• The ScotBlood website if you’re in Scotland
• The Welsh Blood Service website if you’re in Wales
• The Northern Ireland Blood Transfusion website if you’re in Northern Ireland