{"id":12178,"date":"2021-04-22T09:00:00","date_gmt":"2021-04-22T13:00:00","guid":{"rendered":"https:\/\/wfh.org\/la-botswana-inherited-bleeding-disorders-association-devient-onm-associee\/"},"modified":"2024-04-22T09:00:43","modified_gmt":"2024-04-22T13:00:43","slug":"la-botswana-inherited-bleeding-disorders-association-devient-onm-associee","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/la-botswana-inherited-bleeding-disorders-association-devient-onm-associee\/","title":{"rendered":"La Botswana Inherited Bleeding Disorders Association devient ONM associ\u00e9e"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"12178\" class=\"elementor elementor-12178 elementor-3254\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-72219ae elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"72219ae\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-978a67a\" data-id=\"978a67a\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-56cb361 elementor-widget elementor-widget-text-editor\" data-id=\"56cb361\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">Le 16 octobre 2020, au cours de la derni\u00e8re\u00a0<a href=\"https:\/\/wfh.org\/fr\/article\/un-nouveau-president-elu-lors-de-lassemblee-generale-annuelle-2020\/\" target=\"_blank\" rel=\"noopener noreferrer\">assembl\u00e9e g\u00e9n\u00e9rale annuelle<\/a>\u00a0de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH), la Botswana Inherited Bleeding Disorders Association (BIBDA) a re\u00e7u son accr\u00e9ditation en tant qu\u2019organisation nationale membre (ONM) associ\u00e9e, rejoignant ainsi les 147 ONM de la FMH.<\/p>\r\n<p class=\"\">Nelly Monametsi, pr\u00e9sidente de la BIBDA, a elle-m\u00eame une fille atteinte de la\u00a0<a href=\"https:\/\/wfh.org\/fr\/identification-et-diagnostic\/#vwd\" target=\"_blank\" rel=\"noopener noreferrer\">maladie de Willebrand<\/a>\u00a0(MW). Depuis les d\u00e9buts de l\u2019association, c\u2019est Mme Monametsi qui est sa force motrice. Elle explique \u00e0 quel point la vie peut \u00eatre difficile au Botswana pour une personne atteinte d\u2019un trouble de la coagulation\u00a0: \u00ab\u00a0c\u2019est \u00e9puisant de vivre avec une telle maladie\u2026 Il est important que toutes les personnes qui sont affect\u00e9es par un trouble de la coagulation, y compris les parents ou les membres de la communaut\u00e9, apprennent \u00e0 prendre en charge cette maladie pour aider les patients\u00a0\u00bb. Mme Monametsi souligne \u00e9galement les difficult\u00e9s des jeunes \u00e9tudiant\u00b7es. Elle explique que les allers-retours \u00e0 l\u2019h\u00f4pital affectent leur scolarit\u00e9 et peuvent retarder leurs progr\u00e8s. \u00ab\u00a0Parfois, certains \u00e9tudiants ratent leurs examens\u00a0\u00bb, raconte-t-elle, \u00ab\u00a0et ils ont honte d\u2019\u00e9tudier par la suite dans la m\u00eame classe que leurs fr\u00e8res et s\u0153urs plus jeunes\u00a0\u00bb. Les jeunes \u00e9tudiant\u00b7es atteint\u00b7es d\u2019un trouble de la coagulation sont \u00e9galement souvent victimes de stigmatisation, ce qui peut prendre la forme d\u2019une exclusion sociale ou de violences psychologiques.<\/p>\r\n<p class=\"\">La Botswana Inherited Bleeding Disorders Association (BIBDA) est une organisation de patient\u00b7es qui est n\u00e9e apr\u00e8s la dissolution de l\u2019organisation pr\u00e9c\u00e9dente, la Botswana Hemophilia Society. L\u2019association compte aujourd\u2019hui plus de 60 membres, dont pr\u00e8s d\u2019une cinquantaine sont atteints d\u2019un trouble de la coagulation. Le conseil d\u2019administration est compos\u00e9 \u00e0 la fois de m\u00e9decins et de non-sp\u00e9cialistes. Si le pays dispose de deux h\u00f4pitaux centraux, le Princess Marina Hospital (PMH), dans le sud, est le seul \u00e0 proposer des services essentiels pour les personnes atteintes d\u2019h\u00e9mophilie et d\u2019autres troubles de la coagulation. Il conna\u00eet actuellement des difficult\u00e9s, notamment une p\u00e9nurie de facteur de coagulation et des perturbations dans le diagnostic et le traitement.<\/p>\r\n<p class=\"\">Nelly Monametsi a h\u00e2te de travailler avec la FMH\u00a0: \u00ab\u00a0Nous souhaitions devenir une ONM de la FMH pour pouvoir continuer \u00e0 b\u00e9n\u00e9ficier de cette collaboration, \u00e0 la fois pour les patients et pour le personnel de sant\u00e9\u00a0\u00bb. Elle est convaincue que la FMH peut soutenir l\u2019\u00e9quipe de la BIBDA dans ses initiatives en mati\u00e8re de gouvernance, de sensibilisation et d\u2019identification.<\/p>\r\n<p class=\"\">La FMH se r\u00e9jouit de travailler avec la BIBDA pour l\u2019aider \u00e0 am\u00e9liorer les conditions de vie de la communaut\u00e9 des troubles de la coagulation du Botswana. Au nom de la communaut\u00e9 mondiale des troubles de la coagulation, bienvenue \u00e0 la Botswana Inherited Bleeding Disorders Association!<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Le 16 octobre 2020, au cours de la derni\u00e8re assembl\u00e9e g\u00e9n\u00e9rale annuelle de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH), la Botswana Inherited Bleeding Disorders Association (BIBDA) a re\u00e7u son accr\u00e9ditation en tant qu\u2019organisation nationale membre (ONM) associ\u00e9e, rejoignant ainsi les 147 ONM de la FMH.<\/p>\n","protected":false},"author":3,"featured_media":3256,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[171],"tags":[],"search-category":[85],"class_list":["post-12178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites-de-la-fmh","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - 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