Preserving the past to support people with sickle cell

Laurel Brumant-Palmer laughs as she picks up a black-and-white photo of four young women in an office, industrious among 1980s teak desks and shelves of lever-arch files.

“This is my little sister!” she exclaims. Alongside, she spies a pamphlet with a picture of herself in a hospital bed, receiving a blood transfusion around the age of 18. “It’s so surreal. I’m looking at history and I’m thinking, wow, I’m part of that.”

Laurel is exploring the Sickle Cell Society archive, a collection of over 300 items in 29 boxes, including photographs, annual reports, newsletters, fundraising and awareness campaigns – which came to Wellcome Collection in 2019.

Laurel is looking back on history. She’s also looking at a testament to community leadership, activism, lived experience, and campaigning for better care that lives on today.

Sickle cell disease is a serious inherited blood disorder which affects around 7.74 million people globally. It causes red blood cells to become distorted into a crescent or banana shape – their resemblance to a sickle gives the condition its name. These cells can block blood flow and cause extreme pain and life-threatening complications.

The disease is particularly common in people of African, Mediterranean, Middle Eastern, and Indian descent. People living with sickle cell disease need treatment throughout their lives and often face unequal care.

The Sickle Cell Society was set up in 1979 as a national charity to support people living with the condition. The Society's archive tells a story of care, courage and collective action across its work and through the decades – to raise awareness, tackle stigma and ensure equality of care for those affected.

Laurel, who was born in 1963, was three years old when diagnosed.

“Very little was known about sickle cell,” she says. “It was very daunting.”

Elizabeth Anionwu, the UK's first specialist sickle cell nurse, co-founded the Sickle Cell Society. The priority for the Society's early work was educating the public and national health professionals.

“This one is particularly special for me” she says, looking back at one of the newsletters now held in the archive at Wellcome Collection.

“A group of us were involved in putting together what we realised was needed, particularly within the health service, but in other agencies as well. We set out, I think it was 26 examples of where services needed to be improved.”

“We worked fast and furiously in producing the information that people were asking for,” Elizabeth remembers.

“We knew from the American experience that information – clear information – was so important. We deliberately wanted to portray the images of those mainly impacted. It affects a marginalised minority community,” Elizabeth says. “It’s important for that community to know that they’re recognised.”

The archive captures decades of progress in care and awareness.

“You forget how much was achieved by so many different people,” Elizabeth reflects. “Things have definitely improved. There is greater awareness. There are more services up and down the country provided through the NHS. I think one of the major achievements is that all newborn babies are screened for this condition, alongside the Guthrie test – the heel prick test. Life expectation has improved.”

Laurel is living proof of those achievements. “When the Sickle Cell Society came into our life – it was a fantastic support network for us, being that it was such a rare condition in those days. We fought for blood transfusions, and it was one of the reasons why I actually had a life.” 

Wellcome Collection undertook a two-year programme to stabilise, preserve, and catalogue the Society's extensive archive, improving access both for members of the Society and wider audiences.

“By safeguarding these materials for the long term, we enable younger generations to encounter this history first-hand – learning from their predecessors and shaping the Society anew,” says Sonja Schwoll, Head of Conservation and Collections Care at Wellcome Collection.

The project was also supported with funding from the Heritage Lottery Fund and in collaboration with University College London.

Rachel Simpson, Communications Officer at Sickle Cell Society, has personal experience of sickle cell complications. She sees the history of the Society depicted in the archives: an evolving effort to improve lives.

“It’s not a destination – it’s literally a journey that we’re on,” she says. “I think it’s very important to be able to have access to that, for people to know it’s here and for people to know that we're still on that journey, and that is important.”

In 2026, the society and The Royal London Hospital organised an exhibition titled Our Story, Our Journey, featuring material from the archive. 

It was created to raise awareness among staff, especially non-specialists who may treat patients with sickle cell disease.

“It’s a powerful history,” says Alinta Sara, curator of the Our Story, Our Journey. “It shows that change comes from the grassroots organisation... from advocating and activism.” 

“The word that comes into my head is preserving – preserving history – and having history here for yesterday, today, and for the future to come,” says Laurel.