Sickle Cell Awareness Month: What can we do!

As we near the end of September, Sickle Cell Awareness Month in the UK, the need to continue education, advocacy and bring attention to sickle cell disorder (SCD)—a condition that primarily affects people from the global majority, particularly those of African, Caribbean, Middle Eastern, and South Asian descent remains throughout. However, this month offers an opportunity for our communities to come together, raise awareness, and support those affected by this serious but often overlooked condition.

In this blog, we’ll explore why Sickle Cell Awareness Month is so important for people from global majority communities, how we can take action, and how we can stand together to fight the stigma surrounding this condition.

What is Sickle Cell Disorder?

Sickle cell disorder (SCD) is an inherited blood condition that affects how red blood cells work. It is one of the most common genetic disorders globally, and in the UK, it mainly affects people from African and Caribbean communities, although people from Middle Eastern, Indian, and Mediterranean backgrounds can also be affected. Normally, red blood cells are round and flexible, allowing them to move easily through blood vessels. In people with SCD, however, these cells are shaped like a crescent or sickle, making it harder for them to travel through the body. This causes a number of health problems, including:

• Severe pain: when sickle-shaped cells block blood flow, it leads to episodes of extreme pain, called a “sickle cell crisis.”
• Chronic anaemia: sickle cells break down more quickly than normal cells, leading to constant tiredness and weakness.
• Increased risk of infections: damage to organs like the spleen leaves people with SCD more vulnerable to infections.

SCD is one of the most common genetic disorders globally, and in the UK, it mainly affects people from African and Caribbean communities, although people from Middle Eastern, Indian, and Mediterranean backgrounds can also be affected.

Why Sickle Cell Awareness Month Matters for Us?

SDC disproportionately affects global majority communities, yet many people remain unaware of the condition, its symptoms, or even the fact that they may carry the sickle cell trait. Without proper awareness, this can lead to delayed diagnosis, unnecessary suffering, and poorer healthcare experiences for those living with SCD.

The NHS has introduced the Sickle Cell Care Pathway, but more needs to be done to ensure that all individuals with SCD receive timely and compassionate care. Oxbryta (Voxelotor) a relatively new drug developed to reduce “sickling,” – the warping of red blood cells made available this year on the NHS was withdrawn on 25th September 2024 (yesterday) due safety concerns. As a community, we can advocate for better treatment by supporting campaigns and the need for further improvements in healthcare policy.

For our communities, Sickle Cell Awareness Month is about more than just raising awareness—it’s about education, prevention, and empowerment. Here’s why it matters:

• Understanding the Condition: many people of African, Caribbean, and from Middle Eastern, Indian, and Mediterranean backgrounds may carry the sickle cell trait without knowing it. While having the trait doesn’t mean you have the disease, it does mean you could pass it on to your children. Getting tested is crucial for anyone in an at-risk group, particularly if you’re thinking of starting a family.

• Challenging Stigma: Sadly, there is still a lack of understanding and, in some cases, stigma around sickle cell disorder. Too often, individuals with SCD face discrimination or are not taken seriously when they experience pain or fatigue. Across the board, we need more open conversations, challenge misconceptions, and support those living with the condition.

• Fighting Health Inequality: People from the global majority in the UK often face inequalities in healthcare, and individuals with SCD are no exception. Too often, they experience delays in diagnosis, poor pain management, and lack of access to appropriate care. Sickle Cell Awareness Month is a time to highlight these disparities and demand better healthcare for our communities.

• Increasing Blood Donations: One way to directly help people with SCD is by donating blood. Sickle cell patients often need regular blood transfusions to manage their condition, and matching blood types is essential. Unfortunately, ethnic minorities are underrepresented in the UK’s blood donation registry. By donating blood, you could literally save a life.

How can people from the global majority get involved?

We have a critical role to play in raising awareness about sickle cell disorder and supporting those affected. Here are some ways we can make a difference:

1. Get Tested

If you’re of African, Caribbean, Middle Eastern, or South Asian descent, it’s important to know your sickle cell status. Getting tested is easy and can be done through the NHS. If you carry the sickle cell trait, knowing this information will help you make informed decisions about family planning. Getting tested can be particularly useful if you have a family history of sickle cell disease or your partner is known to carry the sickle cell trait. If you think you could be a carrier, talk to a GP about having the test.

2. Spread the Word

Use social media to share information and resources about sickle cell disorder with your friends, family, and community. The more people know about SCD, the less stigma people living with it will face. You can follow and share posts from organisations like the:

• Sickle Cell Society
• Sickle Cell and Young Stroke Survivors
• Sickle Cell 101

3. Donate Blood

There is a particular need for blood donations from people of African and Caribbean descent. Blood donations are essential for treating sickle cell patients, and by donating, you can provide a lifeline to someone in need. Click here to find out more how you can donate.  

4. Support Sickle Cell Charities

Many charities and organisations in the UK, such as the Sickle Cell Society are dedicated to supporting people with sickle cell disorder. You can donate, volunteer, or even fundraise to support their efforts. These organisations play a vital role in raising awareness, providing care, and advocating for policy changes that will benefit individuals with SCD.

Sickle Cell Awareness Month is a time for ethnic minority communities in the UK to come together, educate ourselves, and take action. Whether it’s by getting tested, donating blood, or simply sharing information, we can all contribute to the fight against sickle cell disorder.

It’s time to break the silence, tackle the stigma, and ensure that people with sickle cell are given the care, respect, and support they deserve.

Let’s make a difference together beyond Sickle Cell Awareness Month!

For more information or to get involved, visit:

• Sickle Cell Society
• Sickle Cell and Young Stroke Survivors
• Sickle Cell 101