{"id":8391,"date":"2025-04-12T09:31:52","date_gmt":"2025-04-12T07:31:52","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?p=8391"},"modified":"2025-04-12T11:18:39","modified_gmt":"2025-04-12T09:18:39","slug":"itw-sophie","status":"publish","type":"post","link":"https:\/\/apaiser.org\/newsite\/2025\/04\/12\/itw-sophie\/","title":{"rendered":"Questions \u00e0 Sophie Bertuzzi-Giraudon, vice-pr\u00e9sidente d\u2019APAISER S&C"},"content":{"rendered":"\n

D\u00e9l\u00e9gu\u00e9e r\u00e9gionale d\u2019APAISER S&C en Provence-Alpes-C\u00f4te d\u2019Azur, Sophie Bertuzzi-Giraudon a \u00e9t\u00e9 \u00e9lue vice-pr\u00e9sidente \u00e0 l\u2019occasion du renouvellement du Conseil d\u2019Administration, le 10 mars dernier. Rencontre avec le nouveau visage du Bureau de l\u2019association.<\/em><\/p>\n\n\n\n

Bonjour Sophie, peux-tu te pr\u00e9senter en quelques mots\u00a0?
<\/strong>J\u2019ai 45 ans et je suis maman d\u2019un jeune homme de 21 ans. Je vis \u00e0 Marseille avec mon \u00e9poux. Je suis atteinte d\u2019une Malformation de Chiari de type 1 qui a \u00e9t\u00e9 diagnostiqu\u00e9e en 2019 et pour laquelle j\u2019ai \u00e9t\u00e9 op\u00e9r\u00e9e en juillet 2020. Lors de cette op\u00e9ration, on m\u2019a \u00e9galement diagnostiqu\u00e9 une arachno\u00efdite adh\u00e9sive.\u00a0<\/p>\n\n\n\n

Comment t\u2019es-tu engag\u00e9e au sein d\u2019APAISER S&C\u00a0?
<\/strong>Lors d\u2019une IRM c\u2019est le radiologue qui m\u2019a parl\u00e9 d\u2019un probl\u00e8me de la fente. A la lecture du compte rendu \u00e9tait inscrite malformation de Chiari de type 1. Je ne savais pas trop de quoi il s\u2019agissait donc j\u2019ai effectu\u00e9 des recherches sur internet qui m\u2019ont men\u00e9e d\u00e8s 2019 jusqu\u2019\u00e0 APAISER S&C. Mais c\u2019est surtout apr\u00e8s l\u2019\u00e9tude \u00ab\u00a0Vivre avec\u00a0\u00bb, o\u00f9 j\u2019ai activement particip\u00e9 \u00e0 de nombreux entretiens de groupe, que j\u2019ai eu envie de m\u2019engager pour apporter aux patients et \u00e0 leur famille toute l\u2019aide dont j\u2019avais moi-m\u00eame b\u00e9n\u00e9fici\u00e9. Je suis d\u2019abord devenue b\u00e9n\u00e9vole pour l\u2019Alliance Maladies Rares, qui manquait de personnes \u00e0 Marseille, puis d\u00e9but 2024 je suis devenue d\u00e9l\u00e9gu\u00e9e r\u00e9gionale PACA pour APAISER S&C.<\/p>\n\n\n\n

Comment envisages-tu ton r\u00f4le en tant que vice-pr\u00e9sidente de l\u2019association ?
<\/strong>Mon r\u00f4le, c\u2019est d\u2019assister et de repr\u00e9senter la pr\u00e9sidente, qui ne peut pas se rendre partout, afin de d\u00e9multiplier la pr\u00e9sence et les actions d\u2019APAISER S&C. C\u2019est aussi de participer aux r\u00e9flexions du Bureau et du CA sur les projets de l\u2019association, par exemple pour lever davantage de fonds. Mais j\u2019ai aussi envie de porter au sein de l\u2019association des id\u00e9es qui permettraient de renforcer la pr\u00e9sence d\u2019APAISER S&C dans les centres de comp\u00e9tence. L\u2019un des objectifs \u00e9tant de mettre en place des repr\u00e9sentants des usagers dans ces \u00e9tablissements. Je souhaite \u00e9galement d\u00e9velopper les connaissances de l\u2019association sur l\u2019arachno\u00efdite, qui rel\u00e8ve de nos pathologies.<\/p>\n\n\n\n

Et sur un plan plus personnel, quels sont tes projets aujourd\u2019hui ?
<\/strong>Je travaillais avant ma maladie dans le secteur bancaire. Apr\u00e8s une longue p\u00e9riode d\u2019inactivit\u00e9 et une mise en inaptitude, c\u2019est le b\u00e9n\u00e9volat qui m\u2019a fait reprendre confiance en moi. Je viens de concr\u00e9tiser une formation Patient-Partenaire-Formateur pour travailler aux c\u00f4t\u00e9s des professionnels de sant\u00e9 pour int\u00e9grer la perception des patients dans les parcours de soins. En parall\u00e8le, je finalise mon livre qui est un t\u00e9moignage de vie en tant que patiente atteinte de maladies rares et chroniques. \u00c0 travers mon histoire, j\u2019apporte mon exp\u00e9rience et les solutions qui m\u2019ont permis de surmonter les d\u00e9fis et trouver mon \u00e9quilibre. Je cr\u00e9e \u00e9galement des ateliers de formation pour intervenir aupr\u00e8s des entreprises afin d\u2019am\u00e9liorer le bien-\u00eatre au travail par des ateliers personnalis\u00e9s ax\u00e9s sur la gestion du stress, l\u2019organisation et la coh\u00e9sion d\u2019\u00e9quipe. L\u2019id\u00e9e g\u00e9n\u00e9rale \u00e9tant de mettre au profit des autres mon exp\u00e9rience.<\/p>\n","protected":false},"excerpt":{"rendered":"

D\u00e9l\u00e9gu\u00e9e r\u00e9gionale d\u2019APAISER S&C en Provence-Alpes-C\u00f4te d\u2019Azur, Sophie Bertuzzi-Giraudon a \u00e9t\u00e9 \u00e9lue vice-pr\u00e9sidente \u00e0 l\u2019occasion du renouvellement du Conseil d\u2019Administration, le 10 mars dernier. Rencontre avec le nouveau visage du Bureau de l\u2019association.<\/p>\n","protected":false},"author":1,"featured_media":8276,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[35],"tags":[],"class_list":["post-8391","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actus"],"yoast_head":"\nQuestions \u00e0 Sophie Bertuzzi-Giraudon, vice-pr\u00e9sidente d\u2019APAISER S&C - Apaiser S&C<\/title>\n<meta name=\"description\" content=\"D\u00e9l\u00e9gu\u00e9e r\u00e9gionale d\u2019APAISER S&C en Provence-Alpes-C\u00f4te d\u2019Azur, Sophie Bertuzzi-Giraudon a \u00e9t\u00e9 \u00e9lue vice-pr\u00e9sidente \u00e0 l\u2019occasion du renouvellement du Conseil d\u2019Administration, le 10 mars dernier. 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