Let the Story be told: Sickle Cell Disease a Sierra Leonean Discovery!
By Iyamide Thomas –Regional Care Advisor, Sickle Cell Society
As we approach the end of October and Black History Month in the United Kingdom, it seems a good time to highlight and reflect on an innovative way that was used to raise awareness of sickle cell disease, the inherited blood condition that affects mainly people who originate from Africa, the Caribbean, Middle East, Asia and the Mediterranean. On 15 June 2012 an event billed ‘Let the Story be Told: Sickle Cell Disease — a Sierra Leonean Discovery’ was held in the London Borough of Southwark and was a collaboration between the Sickle Cell Society and the Krio Descendants Union (London). A UK first, this event raised awareness of sickle cell disease and innovatively combined aspects of Krio history and heritage of the Krio individual who first wrote about the condition long before its Western ‘discovery’ in 1910!
Most text books or publications on sickle cell will tell you that it was discovered in 1910 by Dr James Herrick an American doctor from Chicago, when he looked at a blood smear of one of his anaemic patients under a microscope and saw ‘peculiar elongated and sickled (i.e. half-moon shape) cells’. However, this is only when the disease first became known in the West. Long before this, Dr Africanus Horton an illustrious Krio doctor born in Sierra Leone (of Igbo parentage) gave the first written account of the disease that Herrick subsequently called ‘sickle cell anaemia’. In his book ‘The Diseases of Tropical Climates and Their Treatment’ published in 1874, Africanus Horton described various features of an inherited disease, including persistent abnormality of blood, painful crisis associated with fever and increased frequency of the painful episodes during the rainy season and cold weather. Africanus Horton described all the symptoms that we now know to be the hallmark of sickle cell disease and though there might not have been microscopes during his time, this Sierra Leonean born and educated Krio surgeon, scientist, soldier and political thinker who worked towards African independence a century before it occurred should be seen as the true ‘discoverer’ of sickle cell disease!
Edinburgh University Plaque recognising Africanus Horton as their first African graduate
As part of the NHS Sickle Cell and Thalassaemia Screening Programme’s outreach work targeting African and Caribbean communities to raise awareness of sickle cell disease and testing, I have shown the ‘Family Legacy’ DVD drama in interesting and varied settings. However, the 15 June special screening event counts as one of the best so far! Around 80 people packed into the crypt at, St Peters in Liverpool Grove, a popular Sierra Leonean Friday evening meeting place for this special event which started with historian Dorinda Harding (dressed in typical Krio attire of ‘Print’ and ‘carpet slippers’) giving a short history of the ‘Krios’ the descendants of freed slaves — from Britain (the ‘Black Poor’), from America (the ‘ Nova Scotians’ ), from Jamaica (the ‘Maroons’) and slaves that were recaptured at sea ( the ‘Recaptives’ or ‘Liberated Africans’) — who were resettled in Freetown, Sierra Leone. Krios like Africanus Horton went on to become some of Africa’s first doctors, lawyers and administrators. This short history lesson was followed by Madonna Johnson who spoke of her ancestor Thomas Peters, the freed slave who together with British abolitionists advocated for the resettlement in Sierra Leone. In December 2011 a statue was resurrected in Freetown, Sierra Leone to commemorate Thomas Peters as the ‘Founding Father of Freetown’.
Dorinda Harding recites the history of the Krios
After the history session came a presentation on ‘the real discovery of sickle cell’ and the screening of the Family Legacy. The Family Legacy is a short film in which a Nigerian family living in South London is shaken by the news that the baby born to the eldest daughter Simi has been diagnosed with sickle cell disease. The news affects various generations of the family in different ways as they are forced to re-evaluate their own relationships, their fears and misconceptions about the condition and their plans for the future. The baby’s father Femi finds it inconceivable he could be a carrier of the sickle cell gene, denies the baby is his and walks out on Simi. However, for a baby to be born with sickle cell disease both the mother and father have to be carriers of the gene. Each time two carriers have a baby together there is a twenty five percent chance the baby will be born with sickle cell disease. As the story unfolds we discover how subsequent screening for sickle cell disease impacts on each of their lives and their plans for the future. What does Femi decide to do? If you were not at the 15 June event, you will have to watch the film to find out in the Family Legacy film. Filmmaker Obi Emelonye (‘Mirror Boy’, ‘Last Flight to Abuja’) was at our event to give his account of going to get screened for sickle cell. The reaction to the Family Legacy from the mainly Sierra Leonean audience is one of the best I have witnessed. They laughed where there was humour, empathized where there was pain and rebuked where there was denial!
Cross section of the audience
A very interesting discussion followed with a panel that included two sickle cell nurse specialists showing that people had been usefully educated whilst they were being entertained. The entertainment did not stop there; for the second time in history, actress Anni Domingo’s and two others narrated her Krio translation of Maya Angelou’s famous poem ‘Still I Rise’ called ‘Ar go Grap’ in a rendition like you have never heard before! Sickle cell service user Adebisi Aluko then thrilled the crowd with his own brand of comedy that raises awareness of his life with sickle cell anaemia especially when he was back in Nigeria. The programme then came to a close, with the distribution of the NHS Sickle Cell and Thalassaemia Screening Programme ‘goody bags’ and as the crowd departed there was general agreement it had been a thoroughly enjoyable and educational evening.
Iyamide Thomas introduces Adebisi Aluko
The event which presented a historic aspect to raising sickle cell awareness in collaboration with the Krio Descendants Union (London) whose mission is to provide Krios with a forum for preserving, learning and promoting their history, culture and heritage had indeed been a great success. As a result of this success a similar event was subsequently held in October as part of Southwark Council’s official Black History Month 2012 programme.
Useful websites
