A London hospital will investigate the impact of sickle cell disease on eyesight.
The Sickle Eye Project, launched by Central Middlesex Hospital (CMH), will assess how many of the UK’s 15,000 strong sickle cell community have suffered visual loss as a result of the disease.
Sickle cell disease is a group of inherited genetic conditions that affects red blood cells. It is a serious and lifelong condition which can cause regular hospitalisation, although treatment can help manage many symptoms.
The condition is common in people from a black African or Caribbean background.
South London has the highest concentration of people with sickle cell disease in the UK, according to the Sickle Society.
The Sickle Eye Project will involve 600 participants who will have eye scans and brief interviews. Results will be used to better plan services for people at risk of sight loss.
Sickle cell disease can cause progressive loss of sight as it damages blood vessels in the eye, a process known as sickle cell retinopathy. Patients do not always notice early signs of sickle cell retinopathy as it initially only affects peripheral vision.
However, the disease can eventually cause bleeding or the detachment of the retina, which requires urgent treatment.
Christiana Dinah, Director of Research and Innovation at CMH, said the study would “not only benefit the UK population and Western countries but also countries like Sub-Saharan Africa and India” where rates of the disease are high.
“The poor level of funding for Sickle Cell Disease research, both in the UK and globally, is well documented so this is welcome news.”
The project is backed by funding from the National Institute for Health and Care Research (NIHR).
CMH has joined with Moorfields Eye Hospital and 14 other areas around the UK with large Black and Asian communities including Bristol, Manchester and Leeds to form the Sickle Eye Collaborative.
In April, the NHS launched a campaign to raise awareness of the urgent need for more black blood donors to meet the increasing demand for the particular type of blood needed by sickle cell patients, known as the Ro subtype.
Dr Ore-Ofe Ajeigbe, 34, who lives in Kent, described the pain of sickle cell disease as “so bad that I don’t know whether or not I will die” as she urged Londoners affected by the condition to take part in clinical trials.
She enrolled in the TAPS2 feasibility trial at Guy’s and St Thomas’ NHS Foundation Trust last year, which aimed to establish the effectiveness of a treatment called Serial Prophylactic Exchange Blood Transfusion (SPEBT) for improving women’s and babies’ health in pregnant women with sickle cell disease.
In SPEBT, sickle blood is mechanically removed and simultaneously replaced with donor red blood cells.
She told the Standard: “When I am in a sickle cell crisis, the pain can be so bad that I don’t know whether or not I will die. You are desperate for the pain to stop. I feel bad whenever I’m in a crisis as I want to be there for my baby.
“I don’t want her earliest memories of me to be seeing me in the hospital. Thankfully, there is no chance my daughter will have sickle cell disease as my husband isn’t a carrier.
“I was terrified about managing my first pregnancy with sickle cell disease, but this trial took away those fears. The treatment was genuinely life-changing because it took away my pain. I could enjoy my life, my pregnancy and plan for the future. I cannot thank the Guy’s and St Thomas’ team enough
She added: “We all have a part to play, and I urge others to volunteer in sickle cell disease research to help their children, grandchildren and future generations.”
