St George’s Hospital hosted an event on Sickle cell awareness that explored the need for more safe spaces, and representation within medical research.
What is Sickle Cell?
Sickle cell is an invisible disease inherited from both parents causing red blood cells to become sickled in shape which leads to various complications. The main presentations of sickle cell disease are painful attacks known as Sickle cell crises and anaemia. Sickle cell crises cannot be indicated by blood test or observed as pain does not have a biomarker (objective measure that captures what is happening in a cell or an organism at a given moment) and thus patient voice is an important in understanding and establishing a treatment plan for those with sickle cell.
Creating a safe space
Sickle cell disease is prevalent amongst Black groups but is not exclusive and can affect different ethnic groups. Research into Sickle cell is ongoing, where community engagement plays a big part in the establishment of treatments for Sickle cell. Creating a safe space for individuals within the Black community and ethnic minorities to drive representation and inclusivity within medical research on Sickle cell is a crucial objective within healthcare.
A-Z of Sickle cell book:
Lanisha Ewers is the author of A-Z of Sickle cell. A book explaining Sickle cell disease in alphabetical order. A-Z of Sickle cell focuses on the holistic aspects of Sickle cell disease and can be used as a learning resource for children, parents and doctors.
Lived Experience
Lanisha Ewers a carrier of sickle cell trait gave a short talk on her experience as a mother of a child with Sickle cell. Her experience particularly highlighted the importance of screening for Sickle cell and developing optimism around stigma.
Link to website: A-Z Of Sickle Cell Book
Support for Sickle cell:
Sickle Cell Society: Advocates for patients with Sickle cell and ensures policy have been put in place to support and encourage community engagement.
Sickle Cell Society - Supporting People Affected by Sickle Cell Disorder
Wandsworth Sickle cell and Thalassaemia service: Focuses on the care plan of individuals with Sickle cell disease and is collaborating with St George’s haematology team.
Leteshia Abrahams, Specialist Nurse Counsellor (Adult) – Wandsworth Haemoglobinopathy Service
Online resources:
The Sound of Sickle - NHS Blood Donation
Evan Nathan Smith’s parents settle claim and work to improve care for sickle cell patients| Leigh Day
Screening for sickle cell and thalassaemia - NHS (www.nhs.uk)
Diib Abdi
Professional Training Year Student | Inclusive Education Assistant