1srt

the number one
genetic disease
worldwide

50 to 75 %

of african children who are
sufferingfrom the disease
will not see their fifth year

50

million carriers of the trait
in the world

Affiah, a little girl suffering from sickle-cell disease…

Affiah lives in a popular part of Kinshasa in the Democratic Republic of the Congo. She suffers from sickle-cell disease, a genetic illness which affects 2% of children. Her brother also suffers from the disease and they both know the golden rule of hygiene for the sick: take your medicines, don’t miss a doctor’s appointment, drink plenty of water etc. At the age of seven; Affiah was struck by a serious attack of the illness which left her in a coma for several weeks, and then caused paralysis. The little girl suffers from chronic bouts of depression and has trouble sleeping. Every term, after school, she makes her way to Dr. Kitenge at the Hospital in Monkole, about an hour and a half away. She is warmly welcomed by the medical staff, who have got to know her very well.

Affiah’s story is the story of several million children, of which the majority won’t reach the age of five. You will meet Affiah in the documentary which the IECD is currently filming in the Congo. You’ll come to better understand sickle-cell disease, the number one genetic disease worldwide. It is filmed in Kinshasa, but it could just as easily be set in Cameroon, Congo-Brazzaville or in Madagascar, all countries which have the same health crisis.

Sickle-cell disease is the number one genetic disease worldwide, including in France with 50 million carriers of the trait. In Africa 50% to 75% of children who are suffering from the disease will not see their fifth year, dying in excruciating pain. It is also referred to as the disease of broken bones as the pain of an attack resembles the crushing of bones. There is no cure for sickle-cell disease, but treatment of those affected considerably reduces the number of bouts of sickness and the number of complications, particularly resulting infections. Screening at birth allows children to be treated early and thus massively lowers the rate of infant mortality from this disease. The IECD is the first international solidarity organisation to get involved in the fight against sickle-cell disease through its local medical partners. It pushes forward research and facilitates the exchange of experiences in order to improve the screening and treatment of the disease’s victims. Through its support of the Network Study of Sickle-cell Disease in Central Africa and with the media profile of a film it hopes to gain increasing commitments from governments and influence decision-making in health politics.

Voici plus de 15 ans que l’Institut Européen de Coopération et de Développement édite la Lettre « Semeurs d’Avenir », afin de tenir régulièrement informé les donateurs et adhérents que vous êtes, des priorités qui guident ses actions. C’est grâce à vos dons que l’IECD peut inscrire ses projets dans la durée et œuvrer pour l’amélioration des conditions de vie des populations les plus vulnérables, dans le souci constant d’un développement durable et pérenne. Dans des contextes sans cesse mouvants et souvent tendus, rien n’est jamais acquis : vous pouvez être fiers de contribuer à la réussite de jeunes gens qui, grâce à votre soutien, sont aujourd’hui devenus des adultes responsables qui agissent pour le développement de leur pays. Mais la demande est gigantesque, et pour quelques milliers de personnes bénéficiaires que nous avons aidées, combien sont encore dans le besoin ? L’IECD continue de déployer son savoir-faire, aujourd’hui reconnu et valorisé, au service des plus démunis. Vous êtes un maillon essentiel de ce déploiement et nous vous remercions de cette confiance accordée !

Professeur Léon Tshilolo

Pédiatre, hématologue, directeur du Centre de Formation et d’Appui Sanitaire (CEFA), Hôpital Monkole, Kinshasa, République démocratique du Congo.

Parmi les patients que nous suivons, nous avons réussi à diminuer la fréquence des crises de 40 % et à réduire la mortalité des moins de 5 ans de moitié. De plus, en menant des actions de sensibilisation directement dans les écoles et les communautés, nous avons contribué à mieux intégrer les malades et leur famille. Aujourd’hui, les enfants que nous suivons vont à l’école et leurs enseignants savent comment les accompagner.»