{"id":17503,"date":"2025-07-26T06:30:00","date_gmt":"2025-07-26T04:30:00","guid":{"rendered":"https:\/\/www.doctoome.com\/blog\/?p=17503"},"modified":"2025-07-17T09:57:26","modified_gmt":"2025-07-17T07:57:26","slug":"interview-de-lassociation-francaise-du-vitiligo","status":"publish","type":"post","link":"https:\/\/www.doctoome.com\/blog\/interview-de-lassociation-francaise-du-vitiligo\/","title":{"rendered":"Interview de l&rsquo;Association Fran\u00e7aise du Vitiligo"},"content":{"rendered":"\n<p>Je m&rsquo;appelle <strong>Martine Carr\u00e9<\/strong>, je suis pr\u00e9sidente de l&rsquo;Association fran\u00e7aise du Vitiligo depuis plusieurs ann\u00e9es. J\u2019ai moi-m\u00eame \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l\u2019\u00e2ge de 34 ans, et c\u2019est ce v\u00e9cu personnel qui m\u2019a naturellement conduite \u00e0 rejoindre l\u2019association, puis \u00e0 m\u2019y investir pendant plus de 30 ans.<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Vitiligo \u2022 Interview de Martine Carr\u00e9 | Doctoome\" width=\"960\" height=\"540\" data-src=\"https:\/\/www.youtube.com\/embed\/ZDWyk0yIgQ8?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" class=\"lazyload\" data-load-mode=\"1\"><\/iframe>\n<\/div><\/figure>\n\n\n\n<h2 class=\"wp-block-heading has-text-color has-link-color wp-elements-565ebbf2ceb3693b4f6a152198b4a8ac\" style=\"color:#0097a7\">Les actions de l&rsquo;association<\/h2>\n\n\n\n<p>Nous menons de nombreuses actions :<\/p>\n\n\n\n<p>Un site web tr\u00e8s complet, des newsletters, et des r\u00e9seaux sociaux actifs pour une information fiable et valid\u00e9e.<\/p>\n\n\n\n<p>Du soutien au quotidien : conseils sur le maquillage correcteur, la protection solaire, l\u2019application des cr\u00e8mes, etc.<\/p>\n\n\n\n<p>La repr\u00e9sentation des malades aupr\u00e8s du monde m\u00e9dical, de la recherche et des politiques, pour faire avancer la reconnaissance de la maladie.<\/p>\n\n\n\n<h2 class=\"wp-block-heading has-text-color has-link-color wp-elements-26c543691c80397a3901012fc874973c\" style=\"color:#0097a7\">Les besoins des personnes atteintes de vitiligo <\/h2>\n\n\n\n<p>Les malades ont besoin :<\/p>\n\n\n\n<p>D&rsquo;informations compr\u00e9hensibles et accessibles (nous ne sommes pas m\u00e9decins, mais nous reformulons).<\/p>\n\n\n\n<p>D\u2019\u00e9coute bienveillante, car cette maladie touche aussi \u00e9motionnellement.<\/p>\n\n\n\n<p>De savoir qu\u2019ils ne sont pas seuls : cr\u00e9er des espaces de rencontre, d\u2019\u00e9change et d&rsquo;entraide est fondamental.<\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-16018d1d wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-background wp-element-button\" href=\"https:\/\/www.doctoome.com\/s\/dermatologue-et-venerologue\/paris-5?displayedAddress=Paris+15e+Arrondissement\" style=\"background-color:#0097a7\" target=\"_blank\" rel=\"noreferrer noopener\">Consulter un dermatologue autour de moi <\/a><\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading has-text-color has-link-color wp-elements-a314455ece34a56317a91cc35232dc48\" style=\"color:#0097a7\">Sensibilisation du grand public<\/h2>\n\n\n\n<p>Nous agissons pour lutter contre les stigmatisations : regards insistants, refus de contact, discriminations en magasin, etc. Tout cela d\u00e9coule d&rsquo;une m\u00e9connaissance. Notre r\u00f4le est donc de sensibiliser l\u2019\u00e9cole, le monde du travail et la soci\u00e9t\u00e9 en g\u00e9n\u00e9ral \u00e0 la r\u00e9alit\u00e9 du vitiligo. Ce n\u2019est pas une maladie rare : elle touche 1 million de Fran\u00e7ais.<\/p>\n\n\n\n<h2 class=\"wp-block-heading has-text-color has-link-color wp-elements-f3d8f1dca8e16d7f03c4cedf5dcfe66c\" style=\"color:#0097a7\">Exposition au soleil et vitiligo<\/h2>\n\n\n\n<p>Le soleil est \u00e0 la fois b\u00e9n\u00e9fique et dangereux. Il peut d\u00e9clencher des coups de soleil et aggraver les l\u00e9sions, mais il est aussi essentiel pour stimuler la m\u00e9lanine. L\u2019exposition doit \u00eatre progressive et contr\u00f4l\u00e9e :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Jamais entre 11h et 16h.<\/li>\n\n\n\n<li>Commencer par 2 \u00e0 3 minutes sans protection solaire, en dehors des heures \u00e0 risque, puis augmenter petit \u00e0 petit.<\/li>\n\n\n\n<li>Adapter l\u2019indice de protection (SPF 50 au d\u00e9but de l&rsquo;\u00e9t\u00e9, puis r\u00e9duire \u00e0 30).<\/li>\n<\/ul>\n\n\n\n<p>Ce protocole est un vrai compl\u00e9ment au traitement. Le discours a \u00e9volu\u00e9 : aujourd\u2019hui, on encourage les patients \u00e0 vivre au soleil\u2026 intelligemment.<\/p>\n\n\n\n<h2 class=\"wp-block-heading has-text-color has-link-color wp-elements-78eb2fabd0f6e8f9154a617f924bc8c2\" style=\"color:#0097a7\">Les projets de l\u2019association<\/h2>\n\n\n\n<p>Nous allons renforcer :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Nos actions aupr\u00e8s des instances politiques pour am\u00e9liorer le parcours de soin.<\/li>\n\n\n\n<li>Notre implication internationale via une f\u00e9d\u00e9ration mondiale du vitiligo.<\/li>\n\n\n\n<li>La collecte de donn\u00e9es sur les impacts psycho-sociaux de la maladie.<\/li>\n\n\n\n<li>La sensibilisation du public, notamment dans le sport, l\u2019\u00e9cole et les m\u00e9dias.<\/li>\n<\/ul>\n\n\n\n<p>Avec l\u2019arriv\u00e9e de nouveaux traitements, de nouveaux besoins \u00e9mergent, notamment pour accompagner les phases de repigmentation, qui peuvent aussi \u00eatre psychologiquement difficiles.<\/p>\n\n\n\n<h2 class=\"wp-block-heading has-text-color has-link-color wp-elements-ecf809283e8e55e25b26a5f893343b51\" style=\"color:#0097a7\">Message final<\/h2>\n\n\n\n<p>Aux personnes atteintes : Ne restez pas seules. Informez-vous aupr\u00e8s de sources fiables. M\u00e9fiez-vous des traitements miracles. Chaque jour est \u00e0 vivre avec votre vitiligo tel qu\u2019il est.<\/p>\n\n\n\n<p><strong>Aux proches :<\/strong> Accompagnez avec justesse : ni dramatiser, ni minimiser. Soyez pr\u00e9sents, venez aux r\u00e9unions, cherchez l\u2019info avec la personne concern\u00e9e.<\/p>\n\n\n\n<p><strong>Au grand public :<\/strong> Nous avons tous des diff\u00e9rences. Le vitiligo en est une. Faites preuve d\u2019attention, de tol\u00e9rance, et veillez \u00e0 vos paroles et regards. Certains mots, m\u00eame sans mauvaise intention, peuvent blesser.<\/p>\n\n\n\n<p><strong>Autres articles qui pourrait vous int\u00e9resser : <\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Vitiligo \u2013 T\u00e9moignage patient : l\u2019histoire d\u2019Isabelle : <a href=\"https:\/\/www.doctoome.com\/blog\/temoignage-patiente-vitiligo-isabelle\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.doctoome.com\/blog\/temoignage-patiente-vitiligo-isabelle\/<\/a><\/li>\n\n\n\n<li>Sympt\u00f4mes et traitements du Vitiligo : <a href=\"https:\/\/www.doctoome.com\/blog\/vitiligo-prevalence-symptomes-traitements-et-causes\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.doctoome.com\/blog\/vitiligo-prevalence-symptomes-traitements-et-causes\/<\/a><\/li>\n\n\n\n<li>Vitiligo : causes, sympt\u00f4mes et traitements. : <a href=\"https:\/\/www.doctoome.com\/blog\/vitiligo-causes-symptomes-et-traitements\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.doctoome.com\/blog\/vitiligo-causes-symptomes-et-traitements\/<\/a><br><\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Je m&rsquo;appelle Martine Carr\u00e9, je suis pr\u00e9sidente de l&rsquo;Association fran\u00e7aise du Vitiligo depuis plusieurs ann\u00e9es. J\u2019ai moi-m\u00eame \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l\u2019\u00e2ge de 34 ans, et c\u2019est ce v\u00e9cu personnel qui m\u2019a naturellement conduite \u00e0 rejoindre l\u2019association, puis \u00e0 m\u2019y investir pendant plus de 30 ans. Les actions de l&rsquo;association Nous menons de nombreuses actions : Un site web tr\u00e8s complet, des newsletters, et des r\u00e9seaux sociaux actifs pour une information fiable et valid\u00e9e. Du soutien au quotidien : conseils sur le maquillage correcteur, la protection solaire, l\u2019application des cr\u00e8mes, etc. La repr\u00e9sentation des malades aupr\u00e8s du monde m\u00e9dical, de la recherche et des politiques, pour faire avancer la reconnaissance de la maladie. Les besoins des personnes atteintes de vitiligo Les malades ont besoin : D&rsquo;informations compr\u00e9hensibles et accessibles (nous ne sommes pas m\u00e9decins, mais nous reformulons). D\u2019\u00e9coute bienveillante, car cette maladie touche aussi \u00e9motionnellement. De savoir qu\u2019ils ne sont pas seuls : cr\u00e9er des espaces de rencontre, d\u2019\u00e9change et d&rsquo;entraide est fondamental. Sensibilisation du grand public Nous agissons pour lutter contre les stigmatisations : regards insistants, refus de contact, discriminations en magasin, etc. Tout cela d\u00e9coule d&rsquo;une m\u00e9connaissance. Notre r\u00f4le est donc de sensibiliser l\u2019\u00e9cole, le monde du travail et la soci\u00e9t\u00e9 en g\u00e9n\u00e9ral \u00e0 la r\u00e9alit\u00e9 du vitiligo. Ce n\u2019est pas une maladie rare : elle touche 1 million de Fran\u00e7ais. Exposition au soleil et vitiligo Le soleil est \u00e0 la fois b\u00e9n\u00e9fique et dangereux. Il peut d\u00e9clencher des coups de soleil et aggraver les l\u00e9sions, mais il est aussi essentiel pour stimuler la m\u00e9lanine. L\u2019exposition doit \u00eatre progressive et contr\u00f4l\u00e9e : Ce protocole est un vrai compl\u00e9ment au traitement. Le discours a \u00e9volu\u00e9 : aujourd\u2019hui, on encourage les patients \u00e0 vivre au soleil\u2026 intelligemment. Les projets de l\u2019association Nous allons renforcer : Avec l\u2019arriv\u00e9e de nouveaux traitements, de nouveaux besoins \u00e9mergent, notamment pour accompagner les phases de repigmentation, qui peuvent aussi \u00eatre psychologiquement difficiles. Message final Aux personnes atteintes : Ne restez pas seules. Informez-vous aupr\u00e8s de sources fiables. M\u00e9fiez-vous des traitements miracles. Chaque jour est \u00e0 vivre avec votre vitiligo tel qu\u2019il est. Aux proches : Accompagnez avec justesse : ni dramatiser, ni minimiser. Soyez pr\u00e9sents, venez aux r\u00e9unions, cherchez l\u2019info avec la personne concern\u00e9e. Au grand public : Nous avons tous des diff\u00e9rences. Le vitiligo en est une. Faites preuve d\u2019attention, de tol\u00e9rance, et veillez \u00e0 vos paroles et regards. Certains mots, m\u00eame sans mauvaise intention, peuvent blesser. Autres articles qui pourrait vous int\u00e9resser :<\/p>\n","protected":false},"author":126,"featured_media":17506,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2467],"tags":[40,2632],"class_list":["post-17503","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignage","tag-dermatologue-et-venerologue","tag-vitiligo"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Interview de l&#039;Association Fran\u00e7aise du Vitiligo | Blog - Doctoome<\/title>\n<meta name=\"description\" content=\"Martine Carr\u00e9 t\u00e9moigne de son engagement pour le vitiligo et pr\u00e9sente les actions concr\u00e8tes men\u00e9es par l\u2019Association fran\u00e7aise du Vitiligo.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.doctoome.com\/blog\/interview-de-lassociation-francaise-du-vitiligo\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Interview de l&#039;Association Fran\u00e7aise du Vitiligo | Blog - 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