You can shape
Sickle cell disease is currently the most common genetic disorder in the world.²
There are at least 15,000 people living with sickle cell disease in the UK.¹
1 in 79 babies this year will be born with the trait.¹
This space will share lived experiences from the sickle cell disease community as well as co-created content to provide advice, support and actions we can all take to shape the change for people living with sickle cell disease (SCD). SCD is an inherited lifelong condition that can cause debilitating pain and a number of health complications.
‘Shape the change’, therefore, is not a command to the individual with sickle cell disease but is a call to us all – friends, family, colleagues, teachers, neighbours, health professionals and beyond to play an active role in rewriting the narrative.
From how you can save three lives and support your friend in a crisis to considerations that should be made in work and who to turn to for support, we will take you on a journey building you a toolkit along the way so that you can practically do something today to shape the change.
Aisatu was born in Liberia and moved to the UK when she was 3 years old. At this point she was already displaying symptoms of having sickle cell disease; however, her mother was not aware of her condition. “Every time they would take me to hospital, the doctors would tell my mum it’s malaria, she is fine”.
Meet others living with and advocating for people with sickle cell.