{"id":36425,"date":"2023-08-29T12:49:48","date_gmt":"2023-08-29T10:49:48","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=36425"},"modified":"2023-11-30T07:45:31","modified_gmt":"2023-11-30T05:45:31","slug":"se-mettre-dans-la-peau-dune-personne-atteinte-dune-maladie-ultra-rare-premiere-experience-immersive-de-la-fop","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/se-mettre-dans-la-peau-dune-personne-atteinte-dune-maladie-ultra-rare-premiere-experience-immersive-de-la-fop\/","title":{"rendered":"Se mettre dans la peau d&#8217;une personne atteinte d&#8217;une maladie ultra-rare : premi\u00e8re exp\u00e9rience immersive de la FOP"},"content":{"rendered":"\n<p>Vous ne pouvez jamais vraiment comprendre ce que c&#8217;est que de vivre avec une maladie ultra-rare \u00e0 moins de l&#8217;avoir v\u00e9cue par vous-m\u00eame. Et dans cet esprit, nous avons r\u00e9cemment lanc\u00e9 un projet pour aider les professionnels de la sant\u00e9 \u00e0 d\u00e9couvrir ce que c\u2019est que de vivre avec la fibrodysplasie ossifiante progressive (FOP).<\/p>\n\n\n\n<p>La FOP est une maladie g\u00e9n\u00e9tique ultra-rare caract\u00e9ris\u00e9e par une formation osseuse extra-squelettique dans les tissus mous, notamment les muscles, les tendons et les ligaments, qui provoque une perte de mobilit\u00e9 irr\u00e9versible et progressive entra\u00eenant un handicap s\u00e9v\u00e8re. Pour mieux sensibiliser tout un chacun sur cette maladie ultra-rare, nous avons con\u00e7u la premi\u00e8re exp\u00e9rience immersive FOP, qui a permis aux personnes visitant le stand m\u00e9dical d&#8217;Ipsen lors de la r\u00e9union annuelle de l&#8217;American Society for Bone and Mineral Research (ASBMR) d&#8217;exp\u00e9rimenter concr\u00e8tement certaines probl\u00e9matiques physiques et \u00e9motionnelles auxquelles les patients sont confront\u00e9s au quotidien.<\/p>\n\n\n\n<p>Cette exp\u00e9rience immersive se d\u00e9roulait en deux temps :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Les participants devaient relever trois d\u00e9fis physiques \u2013 sortir du lit, prendre son petit-d\u00e9jeuner et mettre une chaussure \u2013 avec certaines restrictions de mouvements pour simuler des articulations bloqu\u00e9es, tout en \u00e9coutant les t\u00e9moignages de personnes atteintes de FOP sur leurs difficult\u00e9s quotidiennes.<\/li>\n\n\n\n<li>Une application mobile invitait les utilisateurs \u00e0 participer \u00e0 d&#8217;autres d\u00e9fis interactifs tout au long du congr\u00e8s, comme essayer de parler avec une m\u00e2choire immobilis\u00e9e, essayer de toucher son visage avec un bras immobilis\u00e9, ressentir de la douleur et des pouss\u00e9es, souffrir d&#8217;anxi\u00e9t\u00e9 et de fatigue. Ces d\u00e9fis \u00e9taient accompagn\u00e9s de r\u00e9cits de personnes vivant avec la FOP.<\/li>\n<\/ul>\n\n\n\n<p>Les r\u00e9actions et les retours des personnes qui ont particip\u00e9 \u00e0 l&#8217;exp\u00e9rience immersive montrent \u00e0 quel point celle-ci a \u00e9t\u00e9 r\u00e9v\u00e9latrice pour elles&nbsp;:<\/p>\n\n\n\n<p>Michelle Davis, Directrice de l&#8217;IFOPA, a d\u00e9clar\u00e9&nbsp;: <em>\u00ab&nbsp;Nous travaillons avec les familles et les patients atteints de FOP, nous \u00e9coutons le r\u00e9cit de leur exp\u00e9rience\u2026 mais faire concr\u00e8tement l&#8217;exp\u00e9rience de leur maladie, mesurer \u00e0 quel point le quotidien est difficile et les patients sont limit\u00e9s, c&#8217;\u00e9tait le plus impactant.&nbsp;\u00bb<\/em><\/p>\n\n\n\n<p>Un professionnel de sant\u00e9 qui a visit\u00e9 le stand a d\u00e9clar\u00e9 : <em>\u00ab La FOP est une maladie ultra-rare, avec une pr\u00e9valence estim\u00e9e \u00e0 1,4 par million d\u2019individus. La maladie entra\u00eene une ossification h\u00e9t\u00e9rotopique (croissance osseuse) qui se produit en dehors du syst\u00e8me squelettique normal. Travaillant dans le domaine des maladies rares, j\u2019ai entendu cette description et dit ces mots \u00e0 de nombreuses reprises, mais depuis que j\u2019ai particip\u00e9 \u00e0 l\u2019exp\u00e9rience immersive FOP d\u2019Ipsen, ils ont pris un nouveau sens.&nbsp;\u00bb<\/em><\/p>\n\n\n\n<p>Compte tenu de son succ\u00e8s \u00e0 l&#8217;ASBMR, l&#8217;exp\u00e9rience interactive sera reproduite lors de futurs congr\u00e8s m\u00e9dicaux et d&#8217;\u00e9v\u00e9nements de sensibilisation organis\u00e9s par des associations de patients.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Vous ne pouvez jamais vraiment comprendre ce que c&#8217;est que de vivre avec une maladie ultra-rare \u00e0 moins de l&#8217;avoir<\/p>\n","protected":false},"author":11,"featured_media":36422,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-36425","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - 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