Our journey, our story is the Sickle Cell Society’s new project funded by the Heritage Lottery Fund. Through oral histories we will explore the history and memory of Sickle Cell Disease in the UK since the Windrush’s arrival. SCD predominantly affects people of Black African and Caribbean heritage and is now the UK’s fastest-growing genetic condition – changes over the last 70 years have been immense. This project is necessary and crucial. Although SCD has been medically recognised as a health condition for over a century, awareness of it remains relatively low and people with SCD are still facing stigma.

This project will look at:

• The issues faced by people with SCD (and carriers of the trait) and their families
• How campaigning and lobbying has dramatically increased awareness and understanding of SCD, improved standards of care, increased diagnosis and informed research and treatment
• The role of the NHS, patient support groups and the Sickle Cell Society
• Recognising the individuals to whom we owe thanks for their tireless hard work and commitment to the cause.

We will target participant groups in London and the rest of the UK (where SCD prevalence is high), engaging a much wider audience in public events. Over a few months, we will deliver:

• A film
• Research/evidence-gathering
• Establishment of a Sickle Cell Society archive
• Heritage workshops engaging young people and the over 50s affected by SCD
• Oral histories obtained from campaigners, pioneers, patients, and other prominent individuals
• An exhibition accompanied by public events.

Whether you are patient, a carer, a family member of a sickle cell patient, a campaigner, medical professional and you want to share your story, your archives or simply you want to know more about the project contact Alinta Sara (alinta.sara@sicklecellsociety.org)