A woman with sickle cell disease wants to deliver lasting change to the next generation by using her experience to help south London research.
Diagnosed with the disease before she was born, Jeannine Joseph, 26, is a patient expert at Guy’s and St Thomas’ NHS Foundation Trust working on a study to improve the treatment for pregnant women with sickle cell disease.
Sickle cell disease is a serious lifelong condition that can result in regular hospitalisation, although treatment can help manage many symptoms.
Joseph said: “Sickle cell disease has caused me a lot of problems.
“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.”
Genetically inherited sickle cell disease produces unusually shaped red blood cells that do not live as long as healthy blood cells and can block blood vessels.
According to the National Institute for Health and Care Excellence (NICE), it is one of the most common genetic conditions affecting people in England.
Joseph added: “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.”
Joseph is urging people to keep an open mind and speak to a doctor or nurse about opportunities to support sickle cell research.
She said: “We can only make a difference in the lives of people with sickle cell if others with the condition get involved in research.”
The treatment being studied by the National Institute for Health and Care Research (NIHR) and supported by the TAPS2 feasibility trial is called Serial Prophylactic Exchange Blood Transfusion (SPEBT).
SPEBT works by mechanically removing sickle blood and replacing it with donor red blood cells.
Joseph said: “The research team at Guy’s and St Thomas’ are so passionate, caring and committed to making a difference.
“Working alongside them and doing my bit for others is a real privilege.”
In England, the condition affects around 15,000 people.
It is common in people with an African or Caribbean family background and according to the National Institute for Health and Care Excellence, the condition is also on the rise in mixed-race families.
Professor Eugene Oteng-Ntim, a Consultant Obstetrician at Guy’s and St Thomas’ NHS Foundation Trust and Principal Investigator for the TAPS2 study, said: “I’m hugely grateful to Jeannine for her invaluable support.
“The results of the TAPS2 study will help us conduct further research to determine if having regular blood exchange transfusions helps women and their babies remain healthier throughout pregnancy.”
The TAPS2 study is supported by the NIHR Research for Patient Benefit Programme.
Women interested in taking part in TAPS2 can email [email protected] or call 020 7188 3634.
Featured image credit: Jeannine Joseph