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Case study: Sickle cell patient keen to deliver lasting change through south London research

Read Jeannine's story.

A woman with sickle cell disease is keen to deliver lasting change for the next generation through south London research.

Sickle cell disease is the name for a group of inherited health genetic conditions that affect red blood cells. People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels.

Jeannine Joseph, 26, Kensal Green, north-west London, works as a patient expert, using her insight and knowledge to inform research within Guy’s and St Thomas’ NHS Foundation Trust.

She is currently working on the National Institute for Health and Care Research (NIHR) supported TAPS2 feasibility trial. The study aims to establish how effective a treatment called Serial Prophylactic Exchange Blood Transfusion (SPEBT) is 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. The NIHR Clinical Research Network South London is supporting the TAPS2 study. Jeannine said:

“Sickle cell disease has caused me a lot of problems. I was diagnosed with it before I was born. Thankfully, I haven’t been hospitalised because of it since 2020. I’ve had blood exchange transfusions for many years, and if I am in a crisis, I may have to spend days or weeks in hospital and be given strong medication and oxygen to deal with my pain.

“I don’t want the next generation to experience my issues. I want them to have access to better treatments, medicines and care, which is only possible through research. I’d urge anyone to speak to a doctor or nurse about any opportunities to support sickle cell research and for them to keep an open mind. We can only make a difference in the lives of people with sickle cell if others with the condition get involved in research.

“The research team at Guy’s and St Thomas’ are fantastic. The staff are so passionate, caring and committed to making a difference. Working alongside them and doing my bit for others is a real privilege.”

Sickle cell disease is common in people with an African or Caribbean family background. In England, the condition affects around 15,000 people. According to the National Institute for Health and Care Excellence, the condition is also on the rise in mixed-race families.

It is a serious and lifelong condition which can cause regular hospitalisation, although treatment can help manage many symptoms. The disorder is also prevalent in Eastern Mediterranean, Middle East, India, Caribbean, and South and Central America.

The TAPS2 study is supported by the NIHR Research for Patient Benefit Programme. More information about sickle cell disease is available on the NHS website.