You can shape
the change

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

Stories

Kehinde Salami

“My initial reaction was what is sickle cell, I don’t understand what that is”.

Stories

Aisatu Beadford–King

People don’t understand how different environments can cause someone to have a crisis“.

Stories

Lowlah Bloom

“I am a living breathing advocate for us”.

Stories

Kehinde Salami

“My initial reaction was what is sickle cell, I don’t understand what that is”.

Stories

Aisatu Beadford–King

People don’t understand how different environments can cause someone to have a crisis“.

Stories

Lowlah Bloom

“I am a living breathing advocate for us”.

Our Mission

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.

Our stories

Read and watch stories from the incredible people living with SCD.

Stories

Aisatu Beadford–King

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”.

Stories

Kehinde Salami

For Kenny his diagnosis came as a shock to him during university. “It was a crazy incident” he states. Kenny was born in Nigeria and came to the UK at the age of five. “Because of the stigma attached to sickle cell it wasn’t a conversation that was often talked about with my family”.
Stories

Lowlah Bloom

Lowlah recalls a time she had to call 911 while in the emergency room because no one could help her. “You hear all this news about people dying with sickle cell, it can be traumatic; all of this just because there is a lack of information available to educate people who can help us”.

Community

Meet others living with and advocating for people with sickle cell.