The Code Red campaign aims to shine a light on the impact of sickle cell disease (SCD) in the UK by putting those with the condition at centre stage. Dunstan, Laurel, Philip and Zainab feature as campaign ambassadors and tell their individual stories of what it's really like to live with sickle cell.
Watch the behind the scenes video, showing the making of the campaign including action from the ambassador photoshoot led by photographer, Christian Cassiel. Plus exclusive interviews with Michelle Salter, Vice Chair of the Sickle Cell Society and Bishop John Francis, Founder of Ruach City Church, discussing the impact of sickle cell on their communities.
Primarily affecting people from African and/or Caribbean backgrounds, approximately 15,000 people are living with SCD in the UK today and around 270 babies are born every year with the condition.1 Yet despite being one of the most common and fastest growing inherited genetic conditions in the UK,2 SCD has been consistently under-researched.3
Sickle cell is a disorder of the haemoglobin in the red blood cells. Haemoglobin is the substance in red blood cells that is responsible for the colour of the cell and for carrying oxygen around the body. Individuals with sickle cell have sickle-shaped red blood cells instead of round.1
Sickle cell comes with significant challenges for both physical and mental health and can impact everyday living, as well as educational and career prospects. Anaemia, dizziness and unpredictable episodes of pain, known as crisis or vaso-occlusive crisis (VOCs) are the hallmarks of this life-long, debilitating condition.4 VOCs disrupt patients’ lives physically, socially, and emotionally – and can worsen into acute and long-term complications.5
“It is a pain where, if tomorrow somebody said to me, you can have a crisis tomorrow or we'll put you in prison for 10 years. Put me in prison for 10 years." Laurel, Art Technician living with sickle cell
People living with SCD suffer an increased risk of high blood pressure, eyesight loss, and kidney and urinary problems, along with long-term damage to internal organs, such as kidneys, liver, spleen, heart and lungs.1
“I know that tomorrow is never promised for anybody, but I think I'm even more aware of that, because of my sickle cell. I don't know if I'm going to have a major complication, a stroke, or if tomorrow might be my last day, so I just live every moment to its fullest and just really enjoy life." Zainab, NHS Innovation Manager living with sickle cell
Treatments exist to help prevent and treat the complications of sickle cell. People living with SCD are encouraged to speak to their healthcare professional about the options available to them.
Amplifying voices of those living with sickle cell
Hear from the Code Red ambassadors, Dunstan, Laurel, Philip, and Zainab speaking about their experiences of life with sickle cell. Through their stories we get a glimpse of the challenges they face every day, including powerful descriptions of what it is like living with SCD and the impact the condition has had on their physical and mental health. Each ambassador has an inspiring story to share; one where they haven’t let sickle cell define them.
Dunstan on the physical and emotional impact of sickle cell
Laurel on what it’s like to experience pain crises
Philip on the day-to-day impact of sickle cell
Zainab on living with an invisible illness
Code Red has been created by Novartis to raise awareness about sickle cell disease (SCD) and features people living with SCD. Participating patients were identified by theSickle Cell Society (SCS). SCS also reviewed and endorsed the campaign concept and associated materials which have been created by Novartis.