{"id":146496,"date":"2025-07-17T09:00:49","date_gmt":"2025-07-17T13:00:49","guid":{"rendered":"https:\/\/wfh.org\/?p=146496"},"modified":"2026-03-10T08:47:54","modified_gmt":"2026-03-10T12:47:54","slug":"dune-situation-de-crise-au-controle-des-symptomes-leffet-de-laide-de-la-fmh-en-zambie","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/dune-situation-de-crise-au-controle-des-symptomes-leffet-de-laide-de-la-fmh-en-zambie\/","title":{"rendered":"D\u2019une situation de crise au contr\u00f4le des sympt\u00f4mes : l\u2019effet de l\u2019aide de la FMH en Zambie"},"content":{"rendered":"\t\t
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La FMH soutient la communaut\u00e9 des troubles de la coagulation en Zambie gr\u00e2ce \u00e0 diverses initiatives dont l\u2019objectif est d\u2019aider le pays \u00e0 construire des infrastructures de sant\u00e9 qui puissent proposer des soins fiables \u00e0 long terme. Gr\u00e2ce au Programme d\u2019aide humanitaire<\/a>, la FMH livre des dons de produits th\u00e9rapeutiques et propose une formation essentielle aux professionnel\u00b7les. Parall\u00e8lement, le programme Parcours d\u2019acc\u00e8s aux soins et au traitement (PACT) se concentre sur l\u2019\u00e9largissement du diagnostic, l\u2019am\u00e9lioration de la sensibilisation et l\u2019augmentation de l\u2019acc\u00e8s aux soins durables dans tout le pays. De plus, une bourse du Programme de soutien \u00e0 la recherche permet aux professionnel\u00b7les de sant\u00e9 de renforcer leurs pratiques de gestion des donn\u00e9es ; les donn\u00e9es locales contribuent \u00e0 la recherche sur l\u2019h\u00e9mophilie par le biais du Registre mondial des troubles de la coagulation (RMTC) de la FMH.<\/p>\n

Chirag, un adulte atteint d\u2019h\u00e9mophilie, se souvient des difficult\u00e9s qu\u2019il a connues enfant. Bien souvent, sa famille achetait du facteur VIII en Afrique du Sud pour l\u2019aider \u00e0 contr\u00f4ler ses saignements. Lorsqu\u2019il s\u2019est cass\u00e9 la jambe, les limites de la th\u00e9rapie substitutive sont devenues \u00e9videntes. Apr\u00e8s cinq interventions chirurgicales et une utilisation intensive de facteur, il a d\u00e9velopp\u00e9 des inhibiteurs, ce qui a rendu ses \u00e9pisodes de saignement plus difficiles \u00e0 contr\u00f4ler. Ce qui a chang\u00e9 les choses pour Chirag, c\u2019est de finalement recevoir une th\u00e9rapie non substitutive. Gr\u00e2ce \u00e0 ce traitement, il ne souffre que tr\u00e8s rarement de saignements d\u00e9sormais. \u00ab Je vais \u00e0 la salle de sport, je fais de la musique\u2026 Je vis la meilleure \u201cvie h\u00e9mophile\u201d possible \u00bb, d\u00e9clare-t-il.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Beaucoup de nos enfants viennent se faire administrer [des th\u00e9rapies non substitutives]\u2026 pr\u00e8s de 30 enfants au total, et depuis qu\u2019ils en b\u00e9n\u00e9ficient, aucun d\u2019entre eux n\u2019a pr\u00e9sent\u00e9 de saignement majeur. Ils peuvent aller \u00e0 l\u2019\u00e9cole et les parents au travail.<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\u2014 Dr Chilala Sichula (MD), m\u00e9decin-cheffe en p\u00e9diatrie \u00e0 l\u2019h\u00f4pital universitaire, minist\u00e8re de la Sant\u00e9<\/p>\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

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L\u2019emicizumab a permis \u00e0 Manasseh et sa famille de trouver une stabilit\u00e9. \u00ab Son traitement a chang\u00e9 notre fa\u00e7on de vivre \u00bb, explique Ackson. \u00ab Cela nous a permis de pouvoir travailler, en sachant que m\u00eame lorsque nous ne sommes pas l\u00e0 [\u2026] et que nous avons des choses \u00e0 faire, notre enfant est en s\u00e9curit\u00e9. \u00bb Ackson esp\u00e8re que Manasseh, qui r\u00eave de devenir m\u00e9decin, pourra inspirer d\u2019autres enfants et militer pour un acc\u00e8s \u00e9largi aux soins. \u00ab Pour ma part, j\u2019esp\u00e8re que mon fils pourra porter cette cause, \u00eatre un exemple pour la communaut\u00e9 [\u2026] et qu\u2019il pourra passer le flambeau \u00e0 d\u2019autres personnes atteintes de la m\u00eame maladie, et faire avancer les choses. \u00bb<\/p>\n

Depuis 2015, le Programme d\u2019aide humanitaire de la FMH a fait don de plus de 16,3 millions d\u2019UI de facteur et de plus de 188 000 mg de th\u00e9rapies non substitutives \u00e0 la Zambie. Rien que l\u2019an dernier, c\u2019est pr\u00e8s de 2,5 millions d\u2019UI de facteur et 22 000 mg de th\u00e9rapies non substitutives qu\u2019a re\u00e7ues le pays. Pour en savoir plus sur le Programme d\u2019aide humanitaire, cliquez ici<\/a>.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\u00c0 propos du Programme d\u2019aide humanitaire de la FMH<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Le Programme d\u2019aide humanitaire de la FMH am\u00e9liore l\u2019acc\u00e8s aux soins et aux traitements en fournissant un soutien essentiel aux personnes atteintes de troubles h\u00e9r\u00e9ditaires de la coagulation dans les pays en d\u00e9veloppement. En apportant aux patient\u00b7es un flux plus r\u00e9gulier et plus pr\u00e9visible de dons humanitaires, le Programme d\u2019aide humanitaire de la FMH leur permet un acc\u00e8s constant et fiable aux traitements et aux soins. Rien de tout cela ne serait possible sans le g\u00e9n\u00e9reux soutien de Sanofi et Sobi, nos Donateurs visionnaires fondateurs ; de Bayer, CSL Behring et Roche, nos Donateurs visionnaires ; de Grifols, notre Donateur encadrant, et de Takeda, notre Donateur contributeur. Pour plus d\u2019informations sur le Programme d\u2019aide humanitaire de la FMH, consultez le site www.treatmentforall.org<\/a>.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\"\"\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\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":"

Pour les familles qui vivent avec l\u2019h\u00e9mophilie, les possibilit\u00e9s de traitement peuvent faire la diff\u00e9rence entre la peur et la libert\u00e9. Ackson, le p\u00e8re de Manasseh, un gar\u00e7on de 10 ans atteint d\u2019h\u00e9mophilie, se souvient des d\u00e9buts du diagnostic de son fils, lorsqu\u2019une petite l\u00e9sion buccale a conduit \u00e0 des jours de saignements incontr\u00f4l\u00e9s et \u00e0 un d\u00e9part pr\u00e9cipit\u00e9 pour l\u2019h\u00f4pital, qui n\u2019\u00e9tait pas \u00e9quip\u00e9 de th\u00e9rapies substitutives. Cette p\u00e9riode d\u2019incertitude et de crise a \u00e9t\u00e9 remplac\u00e9e par du calme et une situation de contr\u00f4le, gr\u00e2ce aux efforts multiples de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH).<\/p>\n","protected":false},"author":13,"featured_media":145490,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[336,184],"tags":[],"search-category":[85],"class_list":["post-146496","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-2-fr","category-programme-daide-humanitaire-de-la-fmh","search-category-article"],"yoast_head":"\nD\u2019une situation de crise au contr\u00f4le des sympt\u00f4mes : l\u2019effet de l\u2019aide de la FMH en Zambie | FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/wfh.org\/fr\/article\/dune-situation-de-crise-au-controle-des-symptomes-leffet-de-laide-de-la-fmh-en-zambie\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u2019une situation de crise au contr\u00f4le des sympt\u00f4mes : l\u2019effet de l\u2019aide de la FMH en Zambie\" \/>\n<meta property=\"og:description\" content=\"Pour les familles qui vivent avec l\u2019h\u00e9mophilie, les possibilit\u00e9s de traitement peuvent faire la diff\u00e9rence entre la peur et la libert\u00e9. Ackson, le p\u00e8re de Manasseh, un gar\u00e7on de 10 ans atteint d\u2019h\u00e9mophilie, se souvient des d\u00e9buts du diagnostic de son fils, lorsqu\u2019une petite l\u00e9sion buccale a conduit \u00e0 des jours de saignements incontr\u00f4l\u00e9s et \u00e0 un d\u00e9part pr\u00e9cipit\u00e9 pour l\u2019h\u00f4pital, qui n\u2019\u00e9tait pas \u00e9quip\u00e9 de th\u00e9rapies substitutives. 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Ackson, le p\u00e8re de Manasseh, un gar\u00e7on de 10 ans atteint d\u2019h\u00e9mophilie, se souvient des d\u00e9buts du diagnostic de son fils, lorsqu\u2019une petite l\u00e9sion buccale a conduit \u00e0 des jours de saignements incontr\u00f4l\u00e9s et \u00e0 un d\u00e9part pr\u00e9cipit\u00e9 pour l\u2019h\u00f4pital, qui n\u2019\u00e9tait pas \u00e9quip\u00e9 de th\u00e9rapies substitutives. 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