Focus on Sickle Cell Disorder

Sickle Cell Disorder (SCD) is one of the most common inherited blood disorders in the UK and disproportionately affects people of African and Caribbean heritage. Approximately 1 in 4 West Africans and 1 in 10 Afro-Caribbeans carry the sickle cell trait.

SCD is characterised by episodes of acute pain, known as crises, caused by blockages in small blood vessels. While bone marrow transplantation can provide a cure for some individuals, it is not suitable for everyone. Most people with SCD therefore live with the condition throughout their lives, managing its physical, emotional, and social impacts.

Alongside painful crises, around half of people living with SCD experience chronic pain. Many also face anaemia requiring blood transfusions, persistent fatigue, and symptoms of depression. Research has shown that individuals with SCD expend more energy at rest than those without the condition.

Despite the significant challenges associated with SCD, many people choose not to disclose their symptoms due to previous negative experiences. Studies have highlighted concerns about patients not being listened to when reporting pain, experiences of racism and discrimination, and stigma associated with the condition. Children with SCD have also reported difficulties accessing basic support at school, including opportunities to stay hydrated, use toilet facilities when needed, and keep warm to help prevent crises.

SCD remains an important example of persisting health inequality. Research suggests that awareness and understanding of the condition remain limited, while funding for SCD research has historically lagged behind that of comparable conditions. People living with SCD can also experience additional financial burdens associated with managing their health.

By increasing knowledge and understanding of SCD, we can help challenge misconceptions, improve experiences of care, reduce stigma, and support efforts to attract much-needed research investment.

About the Session

This event will feature a screening of SICKLE, a powerful short film produced by the Red Cell Network that explores the experiences of people affected by Sickle Cell Disorder.

We are also delighted to welcome Ms Imani Akurang, a fourth-year medical student at Anglia Ruskin University, advocate for people living with SCD, and campaigner for health inclusion.

Innovation and Improvement in Action: Perspectives from a Medical Student

Speaker: Imani Akurang - Fourth-Year Medical Student, Activist, Campaigner and Advocate for Health Inclusion and Sickle Cell Disorder, Anglia Ruskin University

Imani developed a strong interest in tackling health inequalities through both her studies and personal connections to sickle cell disease. Passionate about improving awareness and understanding of SCD, she has become a leading voice in promoting blood and stem cell donation among young people.

In April 2026, Imani organised a blood and stem cell donor registration event at ARU's Chelmsford campus, attracting coverage from ITV and BBC Essex. She has since helped establish the MATCH Network, a student-led initiative working with university societies across the UK to increase awareness of SCD and encourage blood and stem cell donor registration.

Her work has been recognised through several awards and honours, including the Rising Star Award at the Global Queens Community Leadership Awards 2026, Highly Commended recognition for Volunteer of the Year 2023–24, finalist status at the Black Healthcare Awards 2026, and inclusion among the UK's 150 most outstanding Black university students and recent graduates in 2026.

In the future, Imani hopes to combine her commitment to inclusive healthcare and advocacy for people living with SCD with a career in gynaecology and sexual and reproductive health.

During this talk, Imani will introduce the MATCH Network, discuss its ongoing work, and share how students and wider communities can help promote blood and stem cell donation, raise awareness of SCD, and contribute to reducing health inequalities.

Why attend?

• Learn more about Sickle Cell Disorder and its impact on individuals, families, and communities.
• Explore the inequalities and barriers experienced by people living with SCD.
• Watch the short film SICKLE and hear real-life experiences.
• Gain insight into grassroots campaigning, advocacy, and health inclusion.
• Discover how you can support blood and stem cell donation initiatives.

Everyone is welcome.

Part of Chelmsford Science Festival 2026.