{"id":158950,"date":"2025-10-29T09:00:48","date_gmt":"2025-10-29T13:00:48","guid":{"rendered":"https:\/\/wfh.org\/article\/la-vie-dun-jeune-syrien-atteint-dhemophilie-a-transformee\/"},"modified":"2025-11-04T10:01:47","modified_gmt":"2025-11-04T15:01:47","slug":"la-vie-dun-jeune-syrien-atteint-dhemophilie-a-transformee","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/la-vie-dun-jeune-syrien-atteint-dhemophilie-a-transformee\/","title":{"rendered":"La vie d\u2019un jeune syrien atteint d\u2019h\u00e9mophilie A transform\u00e9e"},"content":{"rendered":"\t\t
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La FMH est active en Syrie par l\u2019interm\u00e9diaire de plusieurs initiatives visant \u00e0 aider le pays \u00e0 proposer des soins durables \u00e0 sa communaut\u00e9 des troubles h\u00e9r\u00e9ditaires de la coagulation. Ces efforts, dont l\u2019action du Programme d\u2019aide humanitaire de la FMH<\/a>, font la diff\u00e9rence pour des personnes comme Yousha Mazo.<\/p>\n

N\u00e9 avec une h\u00e9mophilie A s\u00e9v\u00e8re, Yousha a subi plusieurs h\u00e9morragies c\u00e9r\u00e9brales qui l\u2019ont forc\u00e9 \u00e0 \u00eatre hospitalis\u00e9 pour de longues p\u00e9riodes. Des saignements fr\u00e9quents au niveau de ses genoux et de ses chevilles l\u2019ont aussi contraint \u00e0 manquer l\u2019\u00e9cole sur de longues dur\u00e9es. L\u2019une des plus grandes difficult\u00e9s \u00e0 laquelle il a \u00e9t\u00e9 confront\u00e9 a \u00e9t\u00e9 la survenue d\u2019\u00e9pisodes de saignement \u00e0 des moments o\u00f9 l\u2019h\u00f4pital qui le suivait n\u2019avait pas de facteur\u00a0VIII disponible. Sans traitement imm\u00e9diat, la douleur s\u2019est intensifi\u00e9e et il a d\u00fb rester alit\u00e9.<\/p>\n

Tout a chang\u00e9 en f\u00e9vrier 2023, lorsque Yousha a commenc\u00e9 une th\u00e9rapie prophylactique non substitutive, rendue possible par des dons fournis par le Programme d\u2019aide humanitaire de la FMH et soutenue par la Syrian Hemophilia Society. L\u2019impact de ce traitement a compl\u00e8tement chang\u00e9 les choses pour le jeune gar\u00e7on. Ses \u00e9pisodes de saignement ont presque disparu et la crainte constante des saignements aigus et des visites d\u2019urgence \u00e0 l\u2019h\u00f4pital s\u2019est att\u00e9nu\u00e9e pour sa famille. Aujourd\u2019hui, Yousha peut marcher, jouer et retourner \u00e0 l\u2019\u00e9cole avec ses ami\u00b7es.<\/p>\n

En 2024, le Programme d\u2019aide humanitaire de la FMH a fait don de plus de 5 millions d\u2019UI de facteur \u00e0 la Syrie, ainsi que de 53 000 mg de th\u00e9rapies non substitutives. Depuis 2015, c\u2019est pr\u00e8s de 44 millions d\u2019UI de facteur et plus de 185 000 mg de th\u00e9rapies non substitutives que le pays a re\u00e7us en dons. 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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\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":"

L\u2019enfance de Yousha Mazo, 11 ans, originaire de Syrie, a \u00e9t\u00e9 marqu\u00e9e par la douleur, les hospitalisations et la menace constate de saignements qui pouvaient lui co\u00fbter la vie. Heureusement, l\u2019aide de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) lui donne aujourd\u2019hui la possibilit\u00e9 d\u2019avoir une nouvelle vie.<\/p>\n","protected":false},"author":13,"featured_media":157742,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[184],"tags":[],"search-category":[85],"class_list":["post-158950","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-programme-daide-humanitaire-de-la-fmh","search-category-article"],"yoast_head":"\nLa vie d\u2019un jeune syrien atteint d\u2019h\u00e9mophilie A transform\u00e9e | 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\/la-vie-dun-jeune-syrien-atteint-dhemophilie-a-transformee\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La vie d\u2019un jeune syrien atteint d\u2019h\u00e9mophilie A transform\u00e9e\" \/>\n<meta property=\"og:description\" content=\"L\u2019enfance de Yousha Mazo, 11 ans, originaire de Syrie, a \u00e9t\u00e9 marqu\u00e9e par la douleur, les hospitalisations et la menace constate de saignements qui pouvaient lui co\u00fbter la vie. 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