{"id":137417,"date":"2025-03-25T09:00:39","date_gmt":"2025-03-25T13:00:39","guid":{"rendered":"https:\/\/wfh.org\/article\/en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie\/"},"modified":"2025-03-26T10:21:25","modified_gmt":"2025-03-26T14:21:25","slug":"en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie\/","title":{"rendered":"En Ouganda, la FMH change la vie d\u2019un homme atteint d\u2019h\u00e9mophilie"},"content":{"rendered":"\t\t
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Ces efforts permettent \u00e0 l\u2019Ouganda de faire de r\u00e9els progr\u00e8s vers une offre de soins durables pour sa communaut\u00e9 des troubles de la coagulation. Aujourd\u2019hui, nous vous proposons de d\u00e9couvrir comment la F\u00e9d\u00e9ration, gr\u00e2ce aux dons de son programme d\u2019aide humanitaire<\/a> et d\u2019autres initiatives, a compl\u00e8tement chang\u00e9 la vie d\u2019Adonia Musoke, un homme de 34 ans atteint d\u2019h\u00e9mophilie A.<\/p>\n

La maladie d\u2019Adonia Musoke est rest\u00e9e non diagnostiqu\u00e9e pendant des ann\u00e9es. Lorsqu\u2019il \u00e9tait enfant, il a souffert de saignements aigus prolong\u00e9s, de saignements gingivaux et de gonflements articulaires. Lorsqu\u2019il a eu huit ans, il n\u2019avait presque plus aucune mobilit\u00e9 dans son bras gauche, et son bras droit a suivi \u00e0 l\u2019\u00e2ge de dix ans. En l\u2019absence d\u2019un diagnostic clair, son avenir \u00e9tait sombre. Puis, en 2012, la s\u0153ur de M. Musoke a donn\u00e9 naissance \u00e0 un petit gar\u00e7on qui pr\u00e9sentait des sympt\u00f4mes similaires. Cela l\u2019a pouss\u00e9e \u00e0 se renseigner en d\u00e9tail, et elle a rapidement d\u00e9couvert que son b\u00e9b\u00e9 \u00e9tait atteint d\u2019h\u00e9mophilie. M. Musoke est ensuite all\u00e9 faire un test de d\u00e9pistage et a su qu\u2019il \u00e9tait atteint de la m\u00eame maladie.<\/p>\n

Fra\u00eechement diagnostiqu\u00e9, M. Musoke a commenc\u00e9 \u00e0 recevoir un traitement \u00e0 base de perfusion de facteur, ce qui a grandement am\u00e9lior\u00e9 sa sant\u00e9. Il a aussi pu b\u00e9n\u00e9ficier d\u2019aide psychologique et d\u2019informations de la part de la Haemophilia Foundation of Uganda, l\u2019organisation nationale membre (ONM) de la FMH du pays. Cependant, ce parcours a connu un moment dramatique en 2024\u00a0: apr\u00e8s s\u2019\u00eatre fait arracher une dent, le patient a saign\u00e9 pendant un mois malgr\u00e9 des perfusions de facteur VIII. Les m\u00e9decins ont d\u00e9couvert qu\u2019il avait d\u00e9velopp\u00e9 des inhibiteurs, qui emp\u00eachaient le traitement de fonctionner. On lui a donc administr\u00e9 une th\u00e9rapie non substitutive, gr\u00e2ce \u00e0 un don du Programme d\u2019aide humanitaire de la FMH. Cette th\u00e9rapie a transform\u00e9 la vie de M. Musoke, r\u00e9duisant beaucoup ses douleurs articulaires et faisant cesser ses saignements aigus.<\/p>\n

Aujourd\u2019hui, M. Musoke gagne sa vie en tant qu\u2019employ\u00e9 de magasin. Il peut travailler r\u00e9guli\u00e8rement et conserver son emploi puisqu\u2019il n\u2019est plus amen\u00e9 \u00e0 manquer des jours de travail \u00e0 cause de saignements. Il attribue l\u2019am\u00e9lioration de sa sant\u00e9 \u00e0 la FMH, et a bon espoir que de plus en plus d\u2019enfants atteint\u00b7es d\u2019un trouble de la coagulation, comme son neveu, soient diagnostiqu\u00e9\u00b7es t\u00f4t, afin de b\u00e9n\u00e9ficier d\u2019une meilleure qualit\u00e9 de vie que lui.<\/p>\n

Depuis 2015, le Programme d\u2019aide humanitaire a fait don de plus de 20,3 millions d\u2019UI de facteur et de pr\u00e8s de 224\u00a0000 mg de th\u00e9rapies non substitutives \u00e0 l\u2019Ouganda. Rien que l\u2019an dernier, l\u2019Ouganda a re\u00e7u plus de 2 millions d\u2019UI de facteur et 57\u00a0000 mg de th\u00e9rapies non substitutives. Pour en savoir plus sur le Programme d\u2019aide humanitaire de la FMH, 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\u00a0www.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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Le soutien de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) \u00e0 l\u2019Ouganda se fait par le biais de plusieurs initiatives, notamment le Programme d\u2019aide humanitaire et le Programme de jumelage. Dans le cadre de ce dernier, la Haemophilia Foundation of Uganda (HFU) a r\u00e9cemment termin\u00e9 un jumelage avec une autre association de patient\u00b7es, celle du Wyoming\/Montana (\u00c9tats-Unis). La FMH a aussi aid\u00e9 le pays en 2023 gr\u00e2ce \u00e0 une bourse pour la maladie de Willebrand, afin d\u2019aider \u00e0 faire augmenter les taux d\u2019identification de la MW et des autres troubles de la coagulation. <\/p>\n","protected":false},"author":13,"featured_media":136864,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[336,8],"tags":[],"search-category":[85],"class_list":["post-137417","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-2-fr","category-non-classifiee","search-category-article"],"yoast_head":"\nEn Ouganda, la FMH change la vie d\u2019un homme atteint d\u2019h\u00e9mophilie | 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\/en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"En Ouganda, la FMH change la vie d\u2019un homme atteint d\u2019h\u00e9mophilie\" \/>\n<meta property=\"og:description\" content=\"Le soutien de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) \u00e0 l\u2019Ouganda se fait par le biais de plusieurs initiatives, notamment le Programme d\u2019aide humanitaire et le Programme de jumelage. Dans le cadre de ce dernier, la Haemophilia Foundation of Uganda (HFU) a r\u00e9cemment termin\u00e9 un jumelage avec une autre association de patient\u00b7es, celle du Wyoming\/Montana (\u00c9tats-Unis). La FMH a aussi aid\u00e9 le pays en 2023 gr\u00e2ce \u00e0 une bourse pour la maladie de Willebrand, afin d\u2019aider \u00e0 faire augmenter les taux d\u2019identification de la MW et des autres troubles de la coagulation.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie\/\" \/>\n<meta property=\"og:site_name\" content=\"FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/wfhemophilia\/\" \/>\n<meta property=\"article:published_time\" content=\"2025-03-25T13:00:39+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-03-26T14:21:25+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/03\/Adonia-Musoke-header-FR-1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"627\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Mitch Semienchuk\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Mitch Semienchuk\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"En Ouganda, la FMH change la vie d\u2019un homme atteint d\u2019h\u00e9mophilie\",\"datePublished\":\"2025-03-25T13:00:39+00:00\",\"dateModified\":\"2025-03-26T14:21:25+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie\/\"},\"wordCount\":680,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/en-ouganda-la-fmh-change-la-vie-dun-homme-atteint-dhemophilie\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/03\/Adonia-Musoke-header-FR-1.jpg\",\"articleSection\":[\"Featured 2 - 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