{"id":9556399,"date":"2023-06-19T16:52:21","date_gmt":"2023-06-19T14:52:21","guid":{"rendered":"https:\/\/www.chu-poitiers.fr\/?p=9556399"},"modified":"2023-06-23T16:42:18","modified_gmt":"2023-06-23T14:42:18","slug":"la-drepanocytose-au-coeur-de-la-vie-la-sante","status":"publish","type":"post","link":"https:\/\/www.chu-poitiers.fr\/en\/la-drepanocytose-au-coeur-de-la-vie-la-sante\/","title":{"rendered":"La dr\u00e9panocytose au c\u0153ur de la Vie la Sant\u00e9"},"content":{"rendered":"\n<p>Le matin a eu lieu, en collaboration avec l\u2019\u00e9cole de l\u2019ADN et l\u2019Espace Mend\u00e8s France, un atelier s\u2019intitulant \u00ab C\u2019est quoi une maladie g\u00e9n\u00e9tique ? \u00bb. Les participants se sont int\u00e9ress\u00e9s aux cellules, \u00e0 leur composition et les mutations qui peuvent appara\u00eetre. Autour de Laurence H\u00e9chard, de l\u2019\u00e9cole de l\u2019ADN, et de Ludivine Henoux, infirmi\u00e8re d\u2019\u00e9ducation th\u00e9rapeutique r\u00e9f\u00e9rente du programme d\u2019\u00e9ducation th\u00e9rapeutique des maladies du sang, les participants ont manipul\u00e9 et \u00e9tudi\u00e9 au microscope des lames d\u2019oignon et de tomate, puis leurs propres cellules \u00e9pith\u00e9liales. Ils ont appris que l\u2019\u00eatre humain est compos\u00e9 de 200 familles de cellules, dont chacune a un r\u00f4le bien pr\u00e9cis.\u00a0 La journ\u00e9e s\u2019est poursuivie autour d\u2019un repas partag\u00e9 entre les patients suivis dans le cadre du programme d\u2019\u00e9ducation th\u00e9rapeutique des maladies du sang. Ce programme suit plus particuli\u00e8rement les patients porteurs de la dr\u00e9panocytose, maladie g\u00e9n\u00e9tique li\u00e9e \u00e0 une mutation du chromosome 11, la plus r\u00e9pandue en France puisqu\u2019elle touche une naissance sur 1 300. Le CHU de Poitiers est centre de comp\u00e9tence \u00ab syndrome dr\u00e9panocytaires majeurs et autres maladies rares du globule rouge et de l&#8217;\u00e9rythropo\u00ef\u00e8se \u00bb, coordonn\u00e9 par le Dr Justine Dautremer. Du cot\u00e9 p\u00e9diatrique, c\u2019est le Docteur Tackwa Khalifeh qui assure le suivi des enfants. \u00a0Apr\u00e8s avoir ce repas avec les patients, Ludivine Henoux a rythm\u00e9 l\u2019apr\u00e8s-midi autour d\u2019un quiz sur la dr\u00e9panocytose et un atelier sur la transmission g\u00e9n\u00e9tique. Ce fut l\u2019occasion pour les patients d\u2019avoir une meilleure compr\u00e9hension de la transmission de cette maladie, notamment la diff\u00e9rence entre le fait d\u2019\u00eatre porteur sain ou personne qui d\u00e9veloppe la maladie. \u00ab <em>Nous essayons de leur faire prendre conscience que si les deux parents sont porteurs sains, il y a un risque sur quatre que l\u2019enfant d\u00e9veloppe la maladie et que ce risque est le m\u00eame \u00e0 chaque grossesse<\/em>\u00a0\u00bb, indique Ludivine Henoux. Enfin, ils ont construit leur propre arbre g\u00e9n\u00e9alogique. Cette journ\u00e9e conviviale a permis \u00e0 tous de mieux appr\u00e9hender la maladie et sa transmission sous la forme de jeux, accessibles d\u00e8s le plus jeune \u00e2ge.<\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2023\/06\/atelier-1-web-1.jpg\"><img decoding=\"async\" width=\"900\" height=\"405\" data-id=\"9557374\" src=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2023\/06\/atelier-1-web-1.jpg\" alt=\"\" class=\"wp-image-9557374\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2023\/06\/atelier-5-web.jpg\"><img decoding=\"async\" width=\"900\" height=\"405\" data-id=\"9557356\" src=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2023\/06\/atelier-5-web.jpg\" alt=\"\" class=\"wp-image-9557356\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2023\/06\/atelier-6.jpg\"><img decoding=\"async\" width=\"900\" height=\"675\" data-id=\"9557392\" src=\"https:\/\/www.chu-poitiers.fr\/wp-content\/uploads\/2023\/06\/atelier-6.jpg\" alt=\"\" class=\"wp-image-9557392\"\/><\/a><\/figure>\n<\/figure>\n\n\n\n<div style=\"height:34px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-2 is-layout-flex wp-block-gallery-is-layout-flex\"><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>Le 17 Juin, la Vie la Sant\u00e9 a organis\u00e9 une journ\u00e9e autour de la maladie g\u00e9n\u00e9tique et de la maladie du sang, dans le cadre de la journ\u00e9e mondiale\u2026","protected":false},"author":12,"featured_media":9557311,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[96],"tags":[],"class_list":["post-9556399","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-non-classifiee"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - 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