{"id":3344,"date":"2022-06-19T18:19:25","date_gmt":"2022-06-19T18:19:25","guid":{"rendered":"https:\/\/www.africa-press.net\/sao-tome-e-principe\/politique\/connaissez-vous-la-drepanocytose-la-plus-frequente-des-maladies-rares"},"modified":"2022-06-19T18:26:18","modified_gmt":"2022-06-19T18:26:18","slug":"connaissez-vous-la-drepanocytose-la-plus-frequente-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.africa-press.net\/sao-tome-e-principe\/toutes-les-actualites\/connaissez-vous-la-drepanocytose-la-plus-frequente-des-maladies-rares","title":{"rendered":"Connaissez-vous la dr\u00e9panocytose, la plus fr\u00e9quente des maladies rares?"},"content":{"rendered":"

Africa-Press – S\u00e3o Tom\u00e9 e Pr\u00edncipe. <\/strong><\/span>Le 19 juin a lieu la journ\u00e9e de la dr\u00e9panocytose. L’occasion de revenir sur cette maladie g\u00e9n\u00e9tique qui touche 6,9 millions de personnes dans le monde.<\/p>\n

La dr\u00e9panocytose est une des maladies rares dont on parle le moins, et pourtant, elle est la maladie g\u00e9n\u00e9tique la plus r\u00e9pandue dans le monde. Selon les derniers chiffres obtenus par l’INSERM, pr\u00e8s de 470 enfants dr\u00e9panocytaires sont n\u00e9s en France en 2015, ce qui revient \u00e0 une pr\u00e9valence d\u2019un enfant atteint pour 1 736 naissances. (source 1).<\/p>\n

Cette pathologie h\u00e9r\u00e9ditaire touche l\u2019h\u00e9moglobine, le constituant responsable du transport d\u2019oxyg\u00e8ne dans le sang et de sa distribution aux organes. Dans le cas de la dr\u00e9panocytose, l\u2019h\u00e9moglobine prend une forme anormale, ce qui engendre des d\u00e9formations des globules rouges qui deviennent rigides et fragiles.<\/p>\n

Une mauvaise prise en charge<\/p>\n

La dr\u00e9panocytose est une maladie particuli\u00e8rement difficile \u00e0 vivre puisque la majorit\u00e9 des sympt\u00f4mes sont \u00e0 la fois impr\u00e9visibles et invisibles : an\u00e9mie chronique, fi\u00e8vre, crises vaso-occlusives douloureuses…<\/p>\n

Le 12 juin dernier, une \u00e9quipe de chercheurs a publi\u00e9 ce qui est \u00e0 ce jour l’une des plus importantes \u00e9tudes sur les cons\u00e9quences de la dr\u00e9panocytose (source 2). Men\u00e9e dans 10 pays dont la France, l’enqu\u00eate SHAPE (Sickle Cell Health Awareness, Perspectives and Experiences) r\u00e9v\u00e8lent que les complications \u00e0 long terme de cette maladie constituent la principale pr\u00e9occupation des patients et des professionnels de sant\u00e9. Ces derniers d\u00e9plorent \u00e9galement le manque de meilleurs traitements.<\/p>\n

L’avanc\u00e9e de la recherche<\/p>\n

Gr\u00e2ce au travail des scientifiques, la dr\u00e9panocytose est de mieux en mieux comprise. Leurs recherches portent principalement sur l’am\u00e9lioration des traitements. \u00c0 ce sujet, l’INSERM note que trois nouveaux m\u00e9dicaments sont d\u00e9sormais commercialis\u00e9s aux \u00c9tats-Unis \u00e0 la suite d’essais cliniques concluants. Ils pourraient prochainement arriver en France.<\/p>\n

Par ailleurs, lors de la campagne pr\u00e9sidentielle 2022, Emmanuel Macron s’est engag\u00e9 \u00e0 proposer un plan de pr\u00e9vention contre la dr\u00e9panocytose. \u00c0 suivre…<\/p>\n

Pour plus d’informations et d’analyses sur la S\u00e3o Tom\u00e9 e Pr\u00edncipe<\/a>, suivez Africa-Press<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

Africa-Press – S\u00e3o Tom\u00e9 e Pr\u00edncipe. Le 19 juin a lieu la journ\u00e9e de la dr\u00e9panocytose. L’occasion de revenir sur cette maladie g\u00e9n\u00e9tique qui touche 6,9 millions de personnes dans le monde. La dr\u00e9panocytose est une des maladies rares dont on parle le moins, et pourtant, elle est la maladie g\u00e9n\u00e9tique la plus r\u00e9pandue dans […]<\/p>\n","protected":false},"author":82,"featured_media":3343,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[21,11,10],"tags":[36,55,56],"class_list":["post-3344","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-communaute","category-homepage-french","category-toutes-les-actualites","tag-africa-press","tag-africa-press-sao-tome-e-principe","tag-sao-tome-e-principe"],"yoast_head":"\nConnaissez-vous la dr\u00e9panocytose, la plus fr\u00e9quente des maladies rares? - S\u00e3o Tom\u00e9 e Pr\u00edncipe<\/title>\n<meta name=\"description\" content=\"Le 19 juin a lieu la journ\u00e9e de la dr\u00e9panocytose. 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