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Africa is the most affected continent, yet the least equipped to deal with the disorder.
Screening at birth is rarely done. Few health centres specialise in the treatment of sickle cell, which can include prescribing painkillers and providing blood transfusions. Simple treatments such as the use of penicillin in children to prevent infections and taking folic acid to fight anaemia are financially out of reach for most West Africans.
A sickle cell association in Benin reported that even when it offered free screenings, few people came because they could not afford the cost to reach the centre. Ndiaye, who is unemployed, said that his recent stay in hospital cost him US$300.
“I studied catering but I have never had a fixed contract. Companies do not want to hire me because they don't want to have to take care of me if I fall sick,” he said. “You get stigmatised in your professional life and in your private life.”
Sickle cell is still relatively unknown and misunderstood in Africa and those with the disorder often suffer discrimination. In some communities, children are ostracised if they are seen suffering pain from an unknown origin. They can be accused of witchcraft and abandoned by their parents.
Raising awareness
Corinne Mbebi-Liegeois, coordinator of the International Organisation for the Fight Against Sickle Cell, says education is key.
“We need to put in place national programmes for sensitisation to occur in schools and at the university level,” she said. “We also need to educate parents and doctors so they understand the disorder.”
At a recent conference on sickle cell in Senegal's capital, Dakar, emphasis was placed on the management and treatment of the disease in Africa, considered a priority by WHO. Screening was considered crucial for prevention of sickle cell, and for patients to have knowledge of their disorder and receive proper treatment.
“It's not easy, we did not ask to have this, and yet we cannot work or live normally,” said Ndiaye. “Society makes it hard for us.”
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This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions