{"id":5863,"date":"2023-11-30T22:35:40","date_gmt":"2023-11-30T21:35:40","guid":{"rendered":"https:\/\/afkp.fr\/?p=5863"},"modified":"2023-11-30T22:53:30","modified_gmt":"2023-11-30T21:53:30","slug":"osteogenese-imparfaite-et-reeducation","status":"publish","type":"post","link":"https:\/\/afkp.fr\/index.php\/2023\/11\/30\/osteogenese-imparfaite-et-reeducation\/","title":{"rendered":"Ost\u00e9og\u00e9n\u00e8se Imparfaite et R\u00e9\u00e9ducation"},"content":{"rendered":"\n<h1 class=\"wp-block-heading has-white-color has-text-color has-background has-large-font-size\" style=\"background-color:#237585\">Qu\u2019est-ce que l\u2019ost\u00e9ogen\u00e8se imparfaite ?<\/h1>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<p>L\u2019ost\u00e9ogen\u00e8se imparfaite, ou maladie \u00ab des os de verre \u00bb, est une affection g\u00e9n\u00e9tique, caract\u00e9ris\u00e9e par une fragilit\u00e9 osseuse et une faible masse osseuse \u00e0 l\u2019origine de fractures \u00e0 r\u00e9p\u00e9tition, survenant \u00e0 la suite de traumatismes b\u00e9nins. Cette maladie se manifeste tr\u00e8s diff\u00e9remment d\u2019un malade \u00e0 l\u2019autre : il ne s\u2019agit pas d\u2019une entit\u00e9 unique mais plut\u00f4t d\u2019un groupe de maladies. Ceci est d\u2019ailleurs confirm\u00e9 sur le plan g\u00e9n\u00e9tique puisque les progr\u00e8s de la biologie mol\u00e9culaire ont permis de mettre en \u00e9vidence des anomalies g\u00e9n\u00e9tiques vari\u00e9es.<br><br>Cette maladie est g\u00e9n\u00e9tique et h\u00e9r\u00e9ditaire. Elle est habituellement autosomique dominante avec une transmission de g\u00e9n\u00e9ration en g\u00e9n\u00e9ration.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\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=\"L&#039;oste\u0301oge\u0301ne\u0300se imparfaite en 1mn\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/5i2Ene53084?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"has-luminous-vivid-amber-background-color has-background\">L\u2019ost\u00e9ogen\u00e8se imparfaite est une maladie rare et l\u2019on compte environ un malade pour 10 000 \u00e0 20 000 personnes.<br>La pr\u00e9valence de l\u2019affection (nombre de malades dans une population donn\u00e9e) n\u2019est cependant pas connue avec exactitude. <\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"has-luminous-vivid-amber-background-color has-background\">La maladie touche indiff\u00e9remment les personnes des deux sexes, quelle que soit leur origine g\u00e9ographique.<\/p>\n<\/div>\n<\/div>\n\n\n\n<p>L\u2019ost\u00e9ogen\u00e8se imparfaite est li\u00e9e \u00e0 une anomalie du collag\u00e8ne I. Le collag\u00e8ne est une prot\u00e9ine entrant dans la constitution du tissu de soutien de l\u2019organisme. Il existe plusieurs types de collag\u00e8ne. Le type I entre plus particuli\u00e8rement dans la composition de l\u2019os, de la peau, des dents et des ligaments : elle entra\u00eene donc souvent des atteintes en dehors du squelette.<\/p>\n\n\n\n<p>Ci-dessous 3 Podcasts publi\u00e9s par \u00ab\u00a0RARE \u00e0 l&rsquo;\u00e9coute\u00a0\u00bb, la cha\u00eene de Podcast d\u00e9di\u00e9e aux maladies rares.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-d9e1cf5e wp-block-columns-is-layout-flex\" style=\"padding-top:var(--wp--preset--spacing--20);padding-right:var(--wp--preset--spacing--50);padding-bottom:var(--wp--preset--spacing--20);padding-left:var(--wp--preset--spacing--50)\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-embed is-type-rich is-provider-spotify wp-block-embed-spotify wp-embed-aspect-21-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Spotify Embed: Qu&amp;apos;appelle-t-on Ost\u00e9ogen\u00e8se Imparfaite ?\" style=\"border-radius: 12px\" width=\"100%\" height=\"152\" frameborder=\"0\" allowfullscreen allow=\"autoplay; clipboard-write; encrypted-media; fullscreen; picture-in-picture\" loading=\"lazy\" src=\"https:\/\/open.spotify.com\/embed\/episode\/5K79TiCcOslBOLlXNu5eyS?utm_source=oembed\"><\/iframe>\n<\/div><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-embed is-type-rich is-provider-spotify wp-block-embed-spotify wp-embed-aspect-21-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Spotify Embed: Vivre avec une Ost\u00e9ogen\u00e8se Imparfaite\" style=\"border-radius: 12px\" width=\"100%\" height=\"152\" frameborder=\"0\" allowfullscreen allow=\"autoplay; clipboard-write; encrypted-media; fullscreen; picture-in-picture\" loading=\"lazy\" src=\"https:\/\/open.spotify.com\/embed\/episode\/2gJghBbMkLQBzQWG1befWU?utm_source=oembed\"><\/iframe>\n<\/div><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-embed is-type-rich is-provider-spotify wp-block-embed-spotify wp-embed-aspect-21-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Spotify Embed: Prendre en charge l\u2019Ost\u00e9ogen\u00e8se Imparfaite chez l\u2019enfant\" style=\"border-radius: 12px\" width=\"100%\" height=\"152\" frameborder=\"0\" allowfullscreen allow=\"autoplay; clipboard-write; encrypted-media; fullscreen; picture-in-picture\" loading=\"lazy\" src=\"https:\/\/open.spotify.com\/embed\/episode\/68fBC0OTwhcbSvIhWq4JkX?utm_source=oembed\"><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-uagb-buttons uagb-buttons__outer-wrap uagb-btn__default-btn uagb-btn-tablet__default-btn uagb-btn-mobile__default-btn uagb-block-70c8abe8\"><div class=\"uagb-buttons__wrap uagb-buttons-layout-wrap\">\n<div class=\"wp-block-uagb-buttons-child uagb-buttons__outer-wrap uagb-block-f851469d wp-block-button\"><div class=\"uagb-button__wrapper\"><a class=\"uagb-buttons-repeater wp-block-button__link\" href=\"https:\/\/rarealecoute.com\/osteogenese-imparfaite-ou-maladie-des-os-de-verre\/\" onclick=\"return true;\" rel=\"follow noopener\" target=\"_blank\"><span class=\"uagb-button__icon uagb-button__icon-position-before\"><svg xmlns=\"https:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 640 512\"><path d=\"M172.5 131.1C228.1 75.51 320.5 75.51 376.1 131.1C426.1 181.1 433.5 260.8 392.4 318.3L391.3 319.9C381 334.2 361 337.6 346.7 327.3C332.3 317 328.9 297 339.2 282.7L340.3 281.1C363.2 249 359.6 205.1 331.7 177.2C300.3 145.8 249.2 145.8 217.7 177.2L105.5 289.5C73.99 320.1 73.99 372 105.5 403.5C133.3 431.4 177.3 435 209.3 412.1L210.9 410.1C225.3 400.7 245.3 404 255.5 418.4C265.8 432.8 262.5 452.8 248.1 463.1L246.5 464.2C188.1 505.3 110.2 498.7 60.21 448.8C3.741 392.3 3.741 300.7 60.21 244.3L172.5 131.1zM467.5 380C411 436.5 319.5 436.5 263 380C213 330 206.5 251.2 247.6 193.7L248.7 192.1C258.1 177.8 278.1 174.4 293.3 184.7C307.7 194.1 311.1 214.1 300.8 229.3L299.7 230.9C276.8 262.1 280.4 306.9 308.3 334.8C339.7 366.2 390.8 366.2 422.3 334.8L534.5 222.5C566 191 566 139.1 534.5 108.5C506.7 80.63 462.7 76.99 430.7 99.9L429.1 101C414.7 111.3 394.7 107.1 384.5 93.58C374.2 79.2 377.5 59.21 391.9 48.94L393.5 47.82C451 6.731 529.8 13.25 579.8 63.24C636.3 119.7 636.3 211.3 579.8 267.7L467.5 380z\"><\/path><\/svg><\/span><div class=\"uagb-button__link\">revue scientifique r\u00e9alis\u00e9e par RARE a l&rsquo;ecoute<\/div><\/a><\/div><\/div>\n<\/div><\/div>\n\n\n\n<h2 class=\"wp-block-heading has-ast-global-color-1-background-color has-background has-medium-font-size\">Apparition et manifestations<\/h2>\n\n\n\n<p>La maladie se r\u00e9v\u00e8le \u00e0 un \u00e2ge variable en fonction de sa gravit\u00e9. Les formes les plus s\u00e9v\u00e8res apparaissent durant la vie intra-ut\u00e9rine, alors que les formes b\u00e9nignes peuvent se manifester uniquement \u00e0 l\u2019\u00e2ge adulte. Le plus souvent, cependant, les premi\u00e8res fractures surviennent au moment de l\u2019acquisition de la marche.<\/p>\n\n\n\n<p>Les principales manifestations de l\u2019ost\u00e9ogen\u00e8se imparfaite sont li\u00e9es \u00e0 la fragilit\u00e9 osseuse avec des fractures \u00e0 r\u00e9p\u00e9tition, survenant \u00e0 la suite de traumatismes b\u00e9nins. Ces fractures int\u00e9ressent les os plats (c\u00f4tes, vert\u00e8bres) mais surtout le corps (diaphyse) des os longs, notamment des membres inf\u00e9rieurs. Les fractures du f\u00e9mur sont les plus courantes. Ces fractures sont souvent transverses et peu d\u00e9plac\u00e9es. Elles consolident dans les m\u00eames d\u00e9lais que les fractures survenant sur un os normal. Cependant, une consolidation en mauvaise position (cal vicieux) est possible. Certains cals sont trop volumineux (cals hypertrophiques) et on peut alors les confondre avec des tumeurs. La fr\u00e9quence de ces fractures a tendance \u00e0 diminuer avec l\u2019\u00e2ge surtout chez les femmes, gr\u00e2ce \u00e0 la production d\u2019hormones f\u00e9minines (oestrog\u00e8nes), de la pubert\u00e9 \u00e0 la m\u00e9nopause.<\/p>\n\n\n\n<p>Les d\u00e9formations de la colonne vert\u00e9brale avec scoliose sont li\u00e9es \u00e0 des tassements vert\u00e9braux et au d\u00e9faut de croissance des vert\u00e8bres. Elles sont tr\u00e8s fr\u00e9quentes et se combinent avec l\u2019atteinte thoracique pour aggraver l\u2019insuffisance respiratoire.<br><br>La petite taille est tr\u00e8s fr\u00e9quente dans l\u2019ost\u00e9ogen\u00e8se imparfaite.<\/p>\n\n\n\n<p>Les d\u00e9formations cr\u00e2niennes consistent en un d\u00e9placement vers le haut du trou occipital (ouverture \u00e0 la base du cr\u00e2ne qui laisse passer la moelle \u00e9pini\u00e8re) avec des premi\u00e8res vert\u00e8bres semblant enfonc\u00e9es dans la cavit\u00e9 cr\u00e2nienne. On appelle cette d\u00e9formation \u00ab impression basilaire \u00bb. Parfois cette d\u00e9formation est \u00e0 l\u2019origine de complications se manifestant par des maux de t\u00eate (c\u00e9phal\u00e9es), des r\u00e9flexes vifs avec faiblesse des membres inf\u00e9rieurs, ou par une atteinte des nerfs cr\u00e2niens tel que le trijumeau. Enfin, le visage peut \u00eatre un peu d\u00e9form\u00e9 et avoir un aspect triangulaire avec un petit menton.<\/p>\n\n\n\n<p>D\u2019autres manifestations sont possibles : atteinte de la tunique externe de l\u2019\u0153il (scl\u00e9rotique) avec un aspect bleut\u00e9 du blanc de l\u2019\u0153il,  surdit\u00e9 (jamais profonde) fr\u00e9quente \u00e0 l\u2019\u00e2ge adulte mais pouvant survenir d\u00e8s l\u2019\u00e2ge de dix ans,  hyperlaxit\u00e9 ligamentaire,  fragilit\u00e9 de la peau et des capillaires (h\u00e9matomes et saignements de nez surtout chez l\u2019enfant),  atteinte dentaire (dentinogen\u00e8se imparfaite), anomalies cardio-vasculaires  chez l\u2019adulte.<\/p>\n\n\n\n<p>Il n&rsquo;y a pas de trouble cognitif associ\u00e9. On note au contraire g\u00e9n\u00e9ralement une compensation intellectuelle en r\u00e9ponse aux limites physiques que les sujets atteints subissent.<\/p>\n\n\n\n<h2 class=\"wp-block-heading has-ast-global-color-1-background-color has-background has-medium-font-size\">Classification<\/h2>\n\n\n\n<p>Il faut souligner que la maladie est de s\u00e9v\u00e9rit\u00e9 tr\u00e8s variable d\u2019un malade \u00e0 l\u2019autre. Du fait de cette grande variabilit\u00e9 clinique, les m\u00e9decins ont essay\u00e9 d\u2019\u00e9tablir une classification des diff\u00e9rentes formes de la maladie. La classification de Sillence est la plus utilis\u00e9e : elle comprend quatre types.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Le type I : repr\u00e9sente les formes les plus fr\u00e9quentes. Ce sont des formes mod\u00e9r\u00e9es o\u00f9 il y a assez peu de fractures et de d\u00e9formations. Les fractures surviennent habituellement apr\u00e8s la naissance. La taille est proche de la normale. Les scl\u00e9rotiques sont de teinte bleue. La dentinog\u00e9n\u00e8se imparfaite est pr\u00e9sente dans le type I A mais absente dans le I B.<\/li>\n\n\n\n<li>le type II : repr\u00e9sente les formes graves, non compatibles avec la vie (l\u00e9tales). Les fractures sont d\u00e9j\u00e0 pr\u00e9sentes avant la naissance et le cr\u00e2ne est facilement d\u00e9formable. Les enfants d\u00e9c\u00e8dent habituellement tr\u00e8s t\u00f4t du fait d\u2019une insuffisance respiratoire.<\/li>\n\n\n\n<li>le type III : repr\u00e9sente les formes s\u00e9v\u00e8res mais non mortelles. Les fractures surviennent pr\u00e9cocement et assez souvent avant la naissance ; elles s\u2019accompagnent d\u2019une d\u00e9formation de la colonne vert\u00e9brale (cyphoscoliose) et d\u2019une petite taille. Les scl\u00e9rotiques sont de couleur variable. Il peut y avoir une dentinog\u00e9n\u00e8se imparfaite.<\/li>\n\n\n\n<li>le type IV : est caract\u00e9ris\u00e9 par des scl\u00e9rotiques blanches. Il y a des d\u00e9formations des os longs, du cr\u00e2ne et des vert\u00e8bres (vert\u00e8bres aplaties : platyspondylie). La gravit\u00e9 est interm\u00e9diaire entre celle du type I et celle du type III. La dentinog\u00e9n\u00e8se imparfaite n\u2019est pas toujours pr\u00e9sente.<\/li>\n<\/ul>\n\n\n\n<p>Les types 1 et 3 sont les plus fr\u00e9quentes (dominante autosomique), beaucoup d\u2019autres formes sont r\u00e9cessives (bien plus s\u00e9v\u00e8res).<\/p>\n\n\n\n<p>Une forme avec cals hypertrophique (Type V) est importante \u00e0 connaitre. Cette forme est particuli\u00e8rement douloureuse, la mise en place d\u2019anti-inflammatoire est g\u00e9n\u00e9ralement n\u00e9cessaire.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<div class=\"wp-block-uagb-buttons uagb-buttons__outer-wrap uagb-btn__default-btn uagb-btn-tablet__default-btn uagb-btn-mobile__default-btn uagb-block-65e9fb34\"><div class=\"uagb-buttons__wrap uagb-buttons-layout-wrap\">\n<div class=\"wp-block-uagb-buttons-child uagb-buttons__outer-wrap uagb-block-58582a58 wp-block-button\"><div class=\"uagb-button__wrapper\"><a class=\"uagb-buttons-repeater wp-block-button__link\" href=\"https:\/\/www.orpha.net\/data\/patho\/Pub\/fr\/OsteogeneseImparfaite-FRfrPub654v02.pdf\" onclick=\"return true;\" rel=\"follow noopener\" target=\"_blank\"><span class=\"uagb-button__icon uagb-button__icon-position-before\"><svg xmlns=\"https:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 640 512\"><path d=\"M172.5 131.1C228.1 75.51 320.5 75.51 376.1 131.1C426.1 181.1 433.5 260.8 392.4 318.3L391.3 319.9C381 334.2 361 337.6 346.7 327.3C332.3 317 328.9 297 339.2 282.7L340.3 281.1C363.2 249 359.6 205.1 331.7 177.2C300.3 145.8 249.2 145.8 217.7 177.2L105.5 289.5C73.99 320.1 73.99 372 105.5 403.5C133.3 431.4 177.3 435 209.3 412.1L210.9 410.1C225.3 400.7 245.3 404 255.5 418.4C265.8 432.8 262.5 452.8 248.1 463.1L246.5 464.2C188.1 505.3 110.2 498.7 60.21 448.8C3.741 392.3 3.741 300.7 60.21 244.3L172.5 131.1zM467.5 380C411 436.5 319.5 436.5 263 380C213 330 206.5 251.2 247.6 193.7L248.7 192.1C258.1 177.8 278.1 174.4 293.3 184.7C307.7 194.1 311.1 214.1 300.8 229.3L299.7 230.9C276.8 262.1 280.4 306.9 308.3 334.8C339.7 366.2 390.8 366.2 422.3 334.8L534.5 222.5C566 191 566 139.1 534.5 108.5C506.7 80.63 462.7 76.99 430.7 99.9L429.1 101C414.7 111.3 394.7 107.1 384.5 93.58C374.2 79.2 377.5 59.21 391.9 48.94L393.5 47.82C451 6.731 529.8 13.25 579.8 63.24C636.3 119.7 636.3 211.3 579.8 267.7L467.5 380z\"><\/path><\/svg><\/span><div class=\"uagb-button__link\">Fiche orphanet de l&rsquo;osteog\u00e9n\u00e8se imparfaite<\/div><\/a><\/div><\/div>\n<\/div><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<div class=\"wp-block-uagb-buttons uagb-buttons__outer-wrap uagb-btn__default-btn uagb-btn-tablet__default-btn uagb-btn-mobile__default-btn uagb-block-9b00a7a9\"><div class=\"uagb-buttons__wrap uagb-buttons-layout-wrap\">\n<div class=\"wp-block-uagb-buttons-child uagb-buttons__outer-wrap uagb-block-ec84be8e wp-block-button\"><div class=\"uagb-button__wrapper\"><a class=\"uagb-buttons-repeater wp-block-button__link\" href=\"https:\/\/www.has-sante.fr\/upload\/docs\/application\/pdf\/2016-12\/pnds_-_osteogenese_imparfaite.pdf\" onclick=\"return true;\" rel=\"follow noopener\" target=\"_blank\"><span class=\"uagb-button__icon uagb-button__icon-position-before\"><svg xmlns=\"https:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 640 512\"><path d=\"M172.5 131.1C228.1 75.51 320.5 75.51 376.1 131.1C426.1 181.1 433.5 260.8 392.4 318.3L391.3 319.9C381 334.2 361 337.6 346.7 327.3C332.3 317 328.9 297 339.2 282.7L340.3 281.1C363.2 249 359.6 205.1 331.7 177.2C300.3 145.8 249.2 145.8 217.7 177.2L105.5 289.5C73.99 320.1 73.99 372 105.5 403.5C133.3 431.4 177.3 435 209.3 412.1L210.9 410.1C225.3 400.7 245.3 404 255.5 418.4C265.8 432.8 262.5 452.8 248.1 463.1L246.5 464.2C188.1 505.3 110.2 498.7 60.21 448.8C3.741 392.3 3.741 300.7 60.21 244.3L172.5 131.1zM467.5 380C411 436.5 319.5 436.5 263 380C213 330 206.5 251.2 247.6 193.7L248.7 192.1C258.1 177.8 278.1 174.4 293.3 184.7C307.7 194.1 311.1 214.1 300.8 229.3L299.7 230.9C276.8 262.1 280.4 306.9 308.3 334.8C339.7 366.2 390.8 366.2 422.3 334.8L534.5 222.5C566 191 566 139.1 534.5 108.5C506.7 80.63 462.7 76.99 430.7 99.9L429.1 101C414.7 111.3 394.7 107.1 384.5 93.58C374.2 79.2 377.5 59.21 391.9 48.94L393.5 47.82C451 6.731 529.8 13.25 579.8 63.24C636.3 119.7 636.3 211.3 579.8 267.7L467.5 380z\"><\/path><\/svg><\/span><div class=\"uagb-button__link\">Protocole National de Diagnostic et de Soins (PNDS)<\/div><\/a><\/div><\/div>\n<\/div><\/div>\n<\/div>\n<\/div>\n\n\n\n<h1 class=\"wp-block-heading has-white-color has-text-color has-background has-link-color has-large-font-size wp-elements-fc30f56b7c9c5de8e0ed78d4a440fa54\" style=\"background-color:#237585\">Association Vaincre la Maladie des Os de Verre<\/h1>\n\n\n\n<p>Cette pr\u00e9sentation fait suite \u00e0 une conf\u00e9rence, organis\u00e9e \u00e0 Rouen en Octobre 2023, en partenariat entre L&rsquo;Association des Kin\u00e9sith\u00e9rapeutes P\u00e9diatriques du Territoire Normand, et l&rsquo;Association Vaincre la Maladie des Os de Verre.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<p>L&rsquo;Association Vaincre la Maladie des Os de Verre a \u00e9t\u00e9 cr\u00e9\u00e9e en 2017, avec pour vocation de lever des fonds pour favoriser la recherche et oeuvrer par diff\u00e9rentes m\u00e9thodes au bien \u00eatre et \u00e0 la prise en charge des patients, notamment par la kin\u00e9sith\u00e9rapie. Ce n&rsquo;est pas une association de patients.<\/p>\n\n\n\n<p>L&rsquo;association devrait relancer prochainement une recherche fondamentale engag\u00e9e par l&rsquo;INSERM, interrompue faute de financements. Il s&rsquo;agit d&rsquo;une application th\u00e9rapeutique d&rsquo;une mol\u00e9cule dont l&rsquo;objectif est de densifier les os et les emp\u00eacher de se d\u00e9former.<\/p>\n\n\n\n<p>Un autre projet de recherche clinique est en cours, men\u00e9 par le Dr Finidori et Dr Pejin, qui consiste a r\u00e9\u00e9valuer les patients op\u00e9r\u00e9s depuis de nombreuses ann\u00e9es et de complier les donn\u00e9es g\u00e9n\u00e9tiques de ces patients atteints de pathologies associ\u00e9es pour \u00e9tablir un \u00ab\u00a0portrait type\u00a0\u00bb du g\u00e9notype en fonction des atteintes. Actuellement 27 g\u00eanes sont connus pouvant \u00eatre \u00e0 l&rsquo;origine d&rsquo;une Ost\u00e9og\u00e9n\u00e8se Imparfaite. Le premier a \u00e9t\u00e9 d\u00e9couvert en 1994. Cela permettrait de d\u00e9velopper des th\u00e9rapies cibl\u00e9es sur les g\u00eanes concern\u00e9s.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure class=\"wp-block-video\"><video height=\"1080\" style=\"aspect-ratio: 1876 \/ 1080;\" width=\"1876\" controls src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/VMOV-copie.mp4\"><\/video><figcaption class=\"wp-element-caption\">Pr\u00e9sentation de l&rsquo;Association par Anne\u00a0Morand, Pr\u00e9sidente de Vaincre la Maladie des Os de Verre<\/figcaption><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p>Un partenariat avec la Fondation des Maladies Rares a \u00e9t\u00e9 mis en place afin de travailler sur le d\u00e9ficit de croissance : 95% des patients sont de petite taille, mais d&rsquo;autre ont une taille normale malgr\u00e9 50 fractures. 3 laur\u00e9ats ont \u00e9t\u00e9 s\u00e9lectionn\u00e9s, la recherche devrait d\u00e9buter en fin d&rsquo;ann\u00e9e.<\/p>\n\n\n\n<p>La derni\u00e8re mission de l&rsquo;Association concerne l&rsquo;accompagnement des familles ayant un enfant atteint d&rsquo;OI, qui ont beaucoup de mal \u00e0 trouver des kin\u00e9sith\u00e9rapeutes acceptant de prendre leur enfant en r\u00e9\u00e9ducation. Bien souvent, le th\u00e9rapeute est effray\u00e9 \u00e0 l&rsquo;id\u00e9e de \u00ab\u00a0casser\u00a0\u00bb l&rsquo;enfant. L&rsquo;association a donc mis en place une formation sp\u00e9cifique \u00e0 cette maladie pour les diff\u00e9rents th\u00e9rapeutes. <\/p>\n\n\n\n<p>Les h\u00f4pitaux de St Maurice assure une formation r\u00e9guli\u00e8re destin\u00e9e aux kin\u00e9sith\u00e9rapeutes \u00e0 Paris, et d\u00e9sormais aussi \u00ab\u00a0hors les murs\u00a0\u00bb, en partenariat avec les associations de kin\u00e9sith\u00e9rapeutes p\u00e9diatriques r\u00e9gionales. Une indemnisation financi\u00e8re de 400\u20ac + frais d&rsquo;hotel + train pour les participants est pr\u00e9vue par l&rsquo;AVMOV.<\/p>\n\n\n\n<h1 class=\"wp-block-heading has-white-color has-text-color has-background has-link-color has-large-font-size wp-elements-2e6d81995c3590c9425a244ae71ebf14\" style=\"background-color:#237585\">Prise en charge Orthop\u00e9dique<\/h1>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<div class=\"wp-block-uagb-testimonial uagb-slick-carousel uagb-tm__arrow-outside uagb-block-96b1c1ce uagb-post__carousel_notset uagb-post__carousel_notset-tablet uagb-post__carousel_notset-mobile\"><div class=\"is-carousel uagb-tm__columns-1 uagb-tm__items\"><div class=\"uagb-testimonial__wrap  uagb-tm__imgicon-style-circle uagb-tm__image-position-bottom uagb-tm__bg-type-none \"><div class=\"uagb-tm__content\"><div class=\"uagb-tm__overlay\"><\/div><div class=\"uagb-tm__text-wrap\"><div class=\"uagb-tm__desc\">Cette partie est issue de l&rsquo;intervention en Octobre 2023 \u00e0 Rouen du Dr Georges FINIDORI, Chirurgien orthop\u00e9dique infantile, pr\u00e9curseur dans les interventions de patients atteints d&rsquo;Ost\u00e9og\u00e9n\u00e8se Imparfaite, \u00e0 l&rsquo;Hopital Necker-Enfants Malades.<\/div><div class=\"uagb-tm__meta-inner\"><div class=\"uagb-testimonial-details\"><span class=\"uagb-tm__author-name\"><\/span><span class=\"uagb-tm__company\"><\/span><\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure class=\"wp-block-video\"><video height=\"1078\" style=\"aspect-ratio: 1680 \/ 1078;\" width=\"1680\" controls src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Dr-Finidori-Octobre-2023-Rouen.mp4\"><\/video><figcaption class=\"wp-element-caption\">Pr\u00e9sentation r\u00e9alis\u00e9e par le Dr Finidori \u00e0 Rouen en Octobre 2023, conf\u00e9rence organis\u00e9e par <a href=\"https:\/\/www.lakptn.fr\/\" target=\"_blank\" rel=\"noreferrer noopener\">L&rsquo;AKPTN<\/a>. Qualit\u00e9 sonore moyenne &#8211; \u00e9couteurs ou casque pr\u00e9f\u00e9rable.<\/figcaption><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p>L&rsquo;OI est domin\u00e9e sur le plan vital par le risque des d\u00e9formations rachidiennes qui, si elles ne sont pas soign\u00e9es, vont entrainer une insuffisance respiratoire. Si le tronc se d\u00e9forme les poumons seront comprim\u00e9s. Il \u00e9tait rare que les patients survivent \u00e0 40 ans auparavant, cela \u00e0 largement changer gr\u00e2ce aux \u00e9volutions des techniques chirurgicales.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<p>L&rsquo;OI est une maladie autoentretenue : une fracture entraine une immobilisation, qui engendre une fonte musculaire, le squelette se d\u00e9forme, associ\u00e9 \u00e0 une hyperlaxit\u00e9 fr\u00e9quente, qui entraine une perte d&rsquo;amplitude, donc moins de mobilit\u00e9, ce qui favorisera le risque de fracture.<\/p>\n\n\n\n<p>Le traitement fondamental de l&rsquo;OI est la kin\u00e9sith\u00e9rapie (CF plus bas).<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure class=\"wp-block-image size-large\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"561\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.57.00-1024x561.png\" alt=\"\" class=\"wp-image-5895\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.57.00-1024x561.png 1024w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.57.00-300x164.png 300w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.57.00-768x421.png 768w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.57.00.png 1496w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<p>Il y a dans la prise en soin de l&rsquo;OI tout un aspect psychologique et humain priordial : c&rsquo;est une maladie douloureuse, qui g\u00e9n\u00e8re de l&rsquo;anxi\u00e9t\u00e9, une certaine exclusion, des \u00e9checs th\u00e9rapeutiques, qui peut amener un refus des soins et donc de nouvelles factures et douleur.<br>L&rsquo;\u00e9volution peut pour une m\u00eame atteinte permettre une vie autonome, ou une d\u00e9gradation mena\u00e7ant le pronostic vital.<br><\/p>\n\n\n\n<p>La prise en charge de la douleur est essentielle, car elle permet de rompre ce cercle vicieux.<\/p>\n\n\n\n<p>De m\u00eame, il est primordiale d&rsquo;entretenir la motricit\u00e9.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"617\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.59.40-1024x617.png\" alt=\"\" class=\"wp-image-5896\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.59.40-1024x617.png 1024w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.59.40-300x181.png 300w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.59.40-768x463.png 768w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-14.59.40.png 1338w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p>La prise en charge orthop\u00e9dique comporte 3 axes compl\u00e9mentaires :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>R\u00e9\u00e9ducation<\/li>\n\n\n\n<li>Appareillage \/ Immobilisation<\/li>\n\n\n\n<li>Chirurgie des membres et du rachis<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading has-ast-global-color-0-background-color has-background has-medium-font-size\">Immobilisation<\/h2>\n\n\n\n<p>En cas de fracture, qui peut survenir n&rsquo;importe o\u00f9 et n&rsquo;importe quand, le patient risque d&rsquo;\u00eatre manipul\u00e9, parfois sans les pr\u00e9cautions n\u00e9cessaires, par les personnes autour, ou par les pompiers, brancardiers etc.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<p>Il est important d&rsquo;anticiper cette situation, pour limiter le risque de douleurs. Les patients et leur famille doivent apprendre \u00e0 r\u00e9aliser des immobilisations maison avec du carton et du bandage, qui <strong>ne sera en aucun cas retir\u00e9 au cours du transport ou en radiologie<\/strong>. Le kin\u00e9sith\u00e9rapeute joue un r\u00f4le important ici, d&rsquo;apprentissage et d&rsquo;accompagnement des familles.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\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=\"Tutoriel Maladie rare - Immobilisation &quot;maison&quot;  fracture de l&#039;enfant avec fragilit\u00e9 osseuse\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/VjRUdd2j_J0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:80%\">\n<p>Il convient d&rsquo;\u00eatre tr\u00e8s prudent et critique envers l&rsquo;appareillage thermoform\u00e9. Un appareillage n&rsquo;est pas un sarcophage, il ne doit pas immobiliser excessivement. Une immobilisation doit \u00eatre courte et l\u00e9g\u00e8re, permettant de remettre en charge. La priorit\u00e9 de ces patients est le mouvement, et non la surprotection contraignante. Dans ce sens, les attelles de Sarmiento permet de prot\u00e9ger mais de maintenir la charge le plus possible. <\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure data-wp-context=\"{&quot;imageId&quot;:&quot;69f339fc3b21a&quot;}\" data-wp-interactive=\"core\/image\" data-wp-key=\"69f339fc3b21a\" class=\"wp-block-image size-full is-resized wp-lightbox-container\"><img decoding=\"async\" width=\"681\" height=\"550\" data-wp-class--hide=\"state.isContentHidden\" data-wp-class--show=\"state.isContentVisible\" data-wp-init=\"callbacks.setButtonStyles\" data-wp-on--click=\"actions.showLightbox\" data-wp-on--load=\"callbacks.setButtonStyles\" data-wp-on-window--resize=\"callbacks.setButtonStyles\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Sans-titre.jpg\" alt=\"\" class=\"wp-image-5898\" style=\"width:247px;height:auto\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Sans-titre.jpg 681w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Sans-titre-300x242.jpg 300w\" sizes=\"(max-width: 681px) 100vw, 681px\" \/><button\n\t\t\tclass=\"lightbox-trigger\"\n\t\t\ttype=\"button\"\n\t\t\taria-haspopup=\"dialog\"\n\t\t\taria-label=\"Agrandir\"\n\t\t\tdata-wp-init=\"callbacks.initTriggerButton\"\n\t\t\tdata-wp-on--click=\"actions.showLightbox\"\n\t\t\tdata-wp-style--right=\"state.imageButtonRight\"\n\t\t\tdata-wp-style--top=\"state.imageButtonTop\"\n\t\t>\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"12\" height=\"12\" fill=\"none\" viewBox=\"0 0 12 12\">\n\t\t\t\t<path fill=\"#fff\" d=\"M2 0a2 2 0 0 0-2 2v2h1.5V2a.5.5 0 0 1 .5-.5h2V0H2Zm2 10.5H2a.5.5 0 0 1-.5-.5V8H0v2a2 2 0 0 0 2 2h2v-1.5ZM8 12v-1.5h2a.5.5 0 0 0 .5-.5V8H12v2a2 2 0 0 1-2 2H8Zm2-12a2 2 0 0 1 2 2v2h-1.5V2a.5.5 0 0 0-.5-.5H8V0h2Z\" \/>\n\t\t\t<\/svg>\n\t\t<\/button><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:70%\">\n<p>Les Cannes anglaises peuvent contribuer \u00e0 d\u00e9former les avant-bras, il est donc n\u00e9cessaire d&rsquo;adapter les appuis.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure data-wp-context=\"{&quot;imageId&quot;:&quot;69f339fc3b864&quot;}\" data-wp-interactive=\"core\/image\" data-wp-key=\"69f339fc3b864\" class=\"wp-block-image size-large is-resized wp-lightbox-container\"><img loading=\"lazy\" decoding=\"async\" width=\"719\" height=\"1024\" data-wp-class--hide=\"state.isContentHidden\" data-wp-class--show=\"state.isContentVisible\" data-wp-init=\"callbacks.setButtonStyles\" data-wp-on--click=\"actions.showLightbox\" data-wp-on--load=\"callbacks.setButtonStyles\" data-wp-on-window--resize=\"callbacks.setButtonStyles\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Sans-titre-2-719x1024.jpg\" alt=\"\" class=\"wp-image-5897\" style=\"width:180px;height:auto\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Sans-titre-2-719x1024.jpg 719w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Sans-titre-2-211x300.jpg 211w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Sans-titre-2-768x1094.jpg 768w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Sans-titre-2.jpg 901w\" sizes=\"(max-width: 719px) 100vw, 719px\" \/><button\n\t\t\tclass=\"lightbox-trigger\"\n\t\t\ttype=\"button\"\n\t\t\taria-haspopup=\"dialog\"\n\t\t\taria-label=\"Agrandir\"\n\t\t\tdata-wp-init=\"callbacks.initTriggerButton\"\n\t\t\tdata-wp-on--click=\"actions.showLightbox\"\n\t\t\tdata-wp-style--right=\"state.imageButtonRight\"\n\t\t\tdata-wp-style--top=\"state.imageButtonTop\"\n\t\t>\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"12\" height=\"12\" fill=\"none\" viewBox=\"0 0 12 12\">\n\t\t\t\t<path fill=\"#fff\" d=\"M2 0a2 2 0 0 0-2 2v2h1.5V2a.5.5 0 0 1 .5-.5h2V0H2Zm2 10.5H2a.5.5 0 0 1-.5-.5V8H0v2a2 2 0 0 0 2 2h2v-1.5ZM8 12v-1.5h2a.5.5 0 0 0 .5-.5V8H12v2a2 2 0 0 1-2 2H8Zm2-12a2 2 0 0 1 2 2v2h-1.5V2a.5.5 0 0 0-.5-.5H8V0h2Z\" \/>\n\t\t\t<\/svg>\n\t\t<\/button><\/figure>\n<\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading has-ast-global-color-0-background-color has-background has-medium-font-size\">Le traitement chirurgical<\/h2>\n\n\n\n<p>Il a pour but <\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>de prot\u00e9ger l&rsquo;os, <\/li>\n\n\n\n<li>de favoriser la croissance, <\/li>\n\n\n\n<li>d&rsquo;am\u00e9liorer la capacit\u00e9 fonctionnelle du patient, <\/li>\n\n\n\n<li>et de diminuer les douleurs.<\/li>\n<\/ul>\n\n\n\n<p>Une fracture chez un patient OI <strong>ne doit JAMAIS \u00eatre trait\u00e9e par ost\u00e9osynth\u00e8se segmentaire<\/strong>, ce qui est souvent utilis\u00e9 chez les patients adultes. Une ost\u00e9osynt\u00e8se doit prot\u00e9ger tout le segment osseux op\u00e9r\u00e9, d\u2019une \u00e9piphyse \u00e0 l\u2019autre.<\/p>\n\n\n\n<p class=\"has-ast-global-color-0-color has-text-color has-link-color has-medium-font-size wp-elements-73b74df761fb00ccfa197440eb8dedd6\">Clou centro-m\u00e9dullaire<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-content-justification-right is-layout-constrained wp-container-core-column-is-layout-a3883e76 wp-block-column-is-layout-constrained\" style=\"flex-basis:80%\">\n<p>Cela consiste \u00e0 mettre des tuteurs \u00e0 l&rsquo;int\u00e9rieur de l&rsquo;os. L&rsquo;intervention se fait d\u00e8s qu&rsquo;un os commence \u00e0 se d\u00e9former : le premier est toujours le f\u00e9mur car la pression du corps y est la plus importante. Il faut donc prot\u00e9ger les f\u00e9murs \u00e0 l&rsquo;aide d&rsquo;enclouage t\u00e9l\u00e9scopique. Cette intervention permet une protection prolong\u00e9e dans le temps. Plus la forme de l&rsquo;OI est s\u00e9v\u00e8re moins l&rsquo;efficacit\u00e9 est bonne car l&rsquo;enfant bouge davantage. En cas de contrainte le clou va se tordre, l&rsquo;os va se fracturer mais avec il y aura peu de mobilit\u00e9 dans le foyer de fracture, la douleur sera donc moindre. <\/p>\n\n\n\n<p>Le clou doit \u00eatre de taille adapt\u00e9e : un clou trop gros entrainera une r\u00e9sorption osseuse (diminution de la masse) d\u00e9l\u00e9t\u00e8re. <em><strong>Le mat\u00e9riel utilis\u00e9 doit absolument \u00eatre p\u00e9diatrique, et adapt\u00e9 \u00e0 la taille de l&rsquo;enfant.<\/strong><\/em><\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure data-wp-context=\"{&quot;imageId&quot;:&quot;69f339fc3c082&quot;}\" data-wp-interactive=\"core\/image\" data-wp-key=\"69f339fc3c082\" class=\"wp-block-image size-full is-resized wp-lightbox-container\"><img loading=\"lazy\" decoding=\"async\" width=\"756\" height=\"1125\" data-wp-class--hide=\"state.isContentHidden\" data-wp-class--show=\"state.isContentVisible\" data-wp-init=\"callbacks.setButtonStyles\" data-wp-on--click=\"actions.showLightbox\" data-wp-on--load=\"callbacks.setButtonStyles\" data-wp-on-window--resize=\"callbacks.setButtonStyles\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Clou.jpg\" alt=\"\" class=\"wp-image-5899\" style=\"width:182px;height:auto\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Clou.jpg 756w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Clou-202x300.jpg 202w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Clou-688x1024.jpg 688w\" sizes=\"(max-width: 756px) 100vw, 756px\" \/><button\n\t\t\tclass=\"lightbox-trigger\"\n\t\t\ttype=\"button\"\n\t\t\taria-haspopup=\"dialog\"\n\t\t\taria-label=\"Agrandir\"\n\t\t\tdata-wp-init=\"callbacks.initTriggerButton\"\n\t\t\tdata-wp-on--click=\"actions.showLightbox\"\n\t\t\tdata-wp-style--right=\"state.imageButtonRight\"\n\t\t\tdata-wp-style--top=\"state.imageButtonTop\"\n\t\t>\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"12\" height=\"12\" fill=\"none\" viewBox=\"0 0 12 12\">\n\t\t\t\t<path fill=\"#fff\" d=\"M2 0a2 2 0 0 0-2 2v2h1.5V2a.5.5 0 0 1 .5-.5h2V0H2Zm2 10.5H2a.5.5 0 0 1-.5-.5V8H0v2a2 2 0 0 0 2 2h2v-1.5ZM8 12v-1.5h2a.5.5 0 0 0 .5-.5V8H12v2a2 2 0 0 1-2 2H8Zm2-12a2 2 0 0 1 2 2v2h-1.5V2a.5.5 0 0 0-.5-.5H8V0h2Z\" \/>\n\t\t\t<\/svg>\n\t\t<\/button><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p class=\"has-ast-global-color-0-color has-text-color has-link-color has-medium-font-size wp-elements-2507dd79897b738a14c3401ce185b98a\">Broche \u00e9lastique<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p>Les broches entraines moins de r\u00e9sorption osseuse, permettent en m\u00eame temps une protection et la croissance.<\/p>\n\n\n\n<p>En fin de croissance, les gros clous sont retir\u00e9s pour limiter la r\u00e9sorption osseuse, remplac\u00e9s par des broches associ\u00e9es \u00e0 des allogreffes le long de l&rsquo;os afin de le consolider au mieux, avec un cerclage. C&rsquo;est \u00e0 la fois un mat\u00e9riel d&rsquo;ost\u00e9osynth\u00e8se et une augmentation du capital osseux.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure data-wp-context=\"{&quot;imageId&quot;:&quot;69f339fc3c61a&quot;}\" data-wp-interactive=\"core\/image\" data-wp-key=\"69f339fc3c61a\" class=\"wp-block-image size-full is-resized wp-lightbox-container\"><img loading=\"lazy\" decoding=\"async\" width=\"514\" height=\"956\" data-wp-class--hide=\"state.isContentHidden\" data-wp-class--show=\"state.isContentVisible\" data-wp-init=\"callbacks.setButtonStyles\" data-wp-on--click=\"actions.showLightbox\" data-wp-on--load=\"callbacks.setButtonStyles\" data-wp-on-window--resize=\"callbacks.setButtonStyles\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-16.25.41.png\" alt=\"\" class=\"wp-image-5901\" style=\"width:131px;height:auto\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-16.25.41.png 514w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-16.25.41-161x300.png 161w\" sizes=\"(max-width: 514px) 100vw, 514px\" \/><button\n\t\t\tclass=\"lightbox-trigger\"\n\t\t\ttype=\"button\"\n\t\t\taria-haspopup=\"dialog\"\n\t\t\taria-label=\"Agrandir\"\n\t\t\tdata-wp-init=\"callbacks.initTriggerButton\"\n\t\t\tdata-wp-on--click=\"actions.showLightbox\"\n\t\t\tdata-wp-style--right=\"state.imageButtonRight\"\n\t\t\tdata-wp-style--top=\"state.imageButtonTop\"\n\t\t>\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"12\" height=\"12\" fill=\"none\" viewBox=\"0 0 12 12\">\n\t\t\t\t<path fill=\"#fff\" d=\"M2 0a2 2 0 0 0-2 2v2h1.5V2a.5.5 0 0 1 .5-.5h2V0H2Zm2 10.5H2a.5.5 0 0 1-.5-.5V8H0v2a2 2 0 0 0 2 2h2v-1.5ZM8 12v-1.5h2a.5.5 0 0 0 .5-.5V8H12v2a2 2 0 0 1-2 2H8Zm2-12a2 2 0 0 1 2 2v2h-1.5V2a.5.5 0 0 0-.5-.5H8V0h2Z\" \/>\n\t\t\t<\/svg>\n\t\t<\/button><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p class=\"has-ast-global-color-0-color has-text-color has-link-color has-medium-font-size wp-elements-f887315dfb7f300198e60c6b9fdadeb3\">Embrochage extra-osseux<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:70%\">\n<p>Quand le canal m\u00e9dullaire est trop petit, un clou, ou une ou deux broches peuvent passer en extradiaphysaire. La fermeture du p\u00e9rioste va englober la mat\u00e9riel dans une ossification secondaire sous-p\u00e9riost\u00e9e. C&rsquo;est l&#8217;embrochages sous-p\u00e9riost\u00e9s extra diaphysaires.<br><\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure data-wp-context=\"{&quot;imageId&quot;:&quot;69f339fc3cb4c&quot;}\" data-wp-interactive=\"core\/image\" data-wp-key=\"69f339fc3cb4c\" class=\"wp-block-image size-large is-resized wp-lightbox-container\"><img loading=\"lazy\" decoding=\"async\" width=\"855\" height=\"1024\" data-wp-class--hide=\"state.isContentHidden\" data-wp-class--show=\"state.isContentVisible\" data-wp-init=\"callbacks.setButtonStyles\" data-wp-on--click=\"actions.showLightbox\" data-wp-on--load=\"callbacks.setButtonStyles\" data-wp-on-window--resize=\"callbacks.setButtonStyles\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-17.58.57-855x1024.png\" alt=\"\" class=\"wp-image-5903\" style=\"width:230px;height:auto\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-17.58.57-855x1024.png 855w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-17.58.57-251x300.png 251w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-17.58.57-768x920.png 768w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-17.58.57.png 902w\" sizes=\"(max-width: 855px) 100vw, 855px\" \/><button\n\t\t\tclass=\"lightbox-trigger\"\n\t\t\ttype=\"button\"\n\t\t\taria-haspopup=\"dialog\"\n\t\t\taria-label=\"Agrandir\"\n\t\t\tdata-wp-init=\"callbacks.initTriggerButton\"\n\t\t\tdata-wp-on--click=\"actions.showLightbox\"\n\t\t\tdata-wp-style--right=\"state.imageButtonRight\"\n\t\t\tdata-wp-style--top=\"state.imageButtonTop\"\n\t\t>\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"12\" height=\"12\" fill=\"none\" viewBox=\"0 0 12 12\">\n\t\t\t\t<path fill=\"#fff\" d=\"M2 0a2 2 0 0 0-2 2v2h1.5V2a.5.5 0 0 1 .5-.5h2V0H2Zm2 10.5H2a.5.5 0 0 1-.5-.5V8H0v2a2 2 0 0 0 2 2h2v-1.5ZM8 12v-1.5h2a.5.5 0 0 0 .5-.5V8H12v2a2 2 0 0 1-2 2H8Zm2-12a2 2 0 0 1 2 2v2h-1.5V2a.5.5 0 0 0-.5-.5H8V0h2Z\" \/>\n\t\t\t<\/svg>\n\t\t<\/button><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p class=\"has-ast-global-color-0-color has-text-color has-link-color has-medium-font-size wp-elements-72eb5acc62b01d7f5b808dfc4aecb03e\">Les autres sites<\/p>\n\n\n\n<p>L&#8217;embrochage est \u00e9galement utilis\u00e9 sur le tibia, l&rsquo;hum\u00e9rus ou les avant-bras. Les d\u00e9formations du bassin sont fr\u00e9quente mais mal maitris\u00e9es actuellement. Le col du f\u00e9mur se casse \u00e9galement facilement.<\/p>\n\n\n\n<p>Le rachis est le probl\u00e8me principal. Dans les formes s\u00e9v\u00e8res les d\u00e9formations sont importantes. Elles sont \u00e9volutives m\u00eame en fin de corissance. Les corsets sont utilisables dans les formes peu s\u00e9v\u00e8re. Les biphosphonates am\u00e9liorent la croissance des vert\u00e8bres, mais n&rsquo;\u00e9vitent pas les d\u00e9formations. <\/p>\n\n\n\n<p>Les arthrod\u00e8ses sont donc largement utilis\u00e9es, m\u00eame dans les formes s\u00e9v\u00e8res. <\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:70%\">\n<p>Les patients sont souvent orient\u00e9s en chirurgie du rachis trop tardivement, pour \u00ab\u00a0attendre la maturation osseuse\u00a0\u00bb ce qui n&rsquo;est pas justifi\u00e9. En r\u00e9alit\u00e9 le facteur principal est la croissance du tronc. Pour mettre en place une arthrod\u00e8se cette croissance doit \u00eatre termin\u00e9e, il suffit pour cela de mesurer le tronc en consultation, et d&rsquo;en observer l&rsquo;\u00e9volution. Le kin\u00e9sith\u00e9rapeute a un r\u00f4le majeur dans le suivi et l&rsquo;orientation des patients vers les chirurgiens. Le tronc a ensuite tendance \u00e0 se tasser sous l&rsquo;effet des d\u00e9formations, il faut donc r\u00e9agir au bon moment.<\/p>\n\n\n\n<p>De la m\u00eame mani\u00e8re pour les fonctions respiratoires, la chirurgie est indiqu\u00e9e quand le volume n&rsquo;augmente plus.<\/p>\n\n\n\n<p>Dans les formes s\u00e9v\u00e8re ce \u00ab\u00a0bon timing\u00a0\u00bb peut intervenir \u00e0 10 ans, dans les formes moins s\u00e9v\u00e8res vers 12-13 ans.<strong> Une op\u00e9ration \u00e0 17-18 ans est trop tardive.<\/strong><\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure data-wp-context=\"{&quot;imageId&quot;:&quot;69f339fc3d0c9&quot;}\" data-wp-interactive=\"core\/image\" data-wp-key=\"69f339fc3d0c9\" class=\"wp-block-image size-large is-resized wp-lightbox-container\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"794\" data-wp-class--hide=\"state.isContentHidden\" data-wp-class--show=\"state.isContentVisible\" data-wp-init=\"callbacks.setButtonStyles\" data-wp-on--click=\"actions.showLightbox\" data-wp-on--load=\"callbacks.setButtonStyles\" data-wp-on-window--resize=\"callbacks.setButtonStyles\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.02.16-1024x794.png\" alt=\"\" class=\"wp-image-5904\" style=\"width:320px;height:auto\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.02.16-1024x794.png 1024w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.02.16-300x233.png 300w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.02.16-768x595.png 768w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.02.16.png 1380w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><button\n\t\t\tclass=\"lightbox-trigger\"\n\t\t\ttype=\"button\"\n\t\t\taria-haspopup=\"dialog\"\n\t\t\taria-label=\"Agrandir\"\n\t\t\tdata-wp-init=\"callbacks.initTriggerButton\"\n\t\t\tdata-wp-on--click=\"actions.showLightbox\"\n\t\t\tdata-wp-style--right=\"state.imageButtonRight\"\n\t\t\tdata-wp-style--top=\"state.imageButtonTop\"\n\t\t>\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"12\" height=\"12\" fill=\"none\" viewBox=\"0 0 12 12\">\n\t\t\t\t<path fill=\"#fff\" d=\"M2 0a2 2 0 0 0-2 2v2h1.5V2a.5.5 0 0 1 .5-.5h2V0H2Zm2 10.5H2a.5.5 0 0 1-.5-.5V8H0v2a2 2 0 0 0 2 2h2v-1.5ZM8 12v-1.5h2a.5.5 0 0 0 .5-.5V8H12v2a2 2 0 0 1-2 2H8Zm2-12a2 2 0 0 1 2 2v2h-1.5V2a.5.5 0 0 0-.5-.5H8V0h2Z\" \/>\n\t\t\t<\/svg>\n\t\t<\/button><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p>Avant la chirurgie du rachis, une phase de r\u00e9\u00e9ducation pr\u00e9op\u00e9ratoire en SSR est n\u00e9cessaire avec mise en traction pour \u00ab\u00a0d\u00e9plisser\u00a0\u00bb le rachis.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<p>La mise en place d\u2019arthrod\u00e8se permet\u00a0:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Une nette correction angulaire<\/li>\n\n\n\n<li>Une protection des fonctions respiratoires (VC +20%)<\/li>\n\n\n\n<li>Une autonomie am\u00e9lior\u00e9e<\/li>\n\n\n\n<li>Une r\u00e9duction du d\u00e9s\u00e9quilibre du tronc<\/li>\n\n\n\n<li>Une am\u00e9lioration de l\u2019aspect physique<\/li>\n\n\n\n<li>Un gain de taille de 6cm en moyenne<\/li>\n\n\n\n<li>&nbsp;La mortalit\u00e9 est nulle<\/li>\n<\/ul>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"825\" src=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.05.47-1024x825.png\" alt=\"\" class=\"wp-image-5905\" srcset=\"https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.05.47-1024x825.png 1024w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.05.47-300x242.png 300w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.05.47-768x619.png 768w, https:\/\/afkp.fr\/wp-content\/uploads\/2023\/11\/Capture-decran-2023-11-30-a-18.05.47.png 1286w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading has-ast-global-color-0-background-color has-background has-medium-font-size\">Kin\u00e9sith\u00e9rapie<\/h2>\n\n\n\n<p>L&rsquo;objectif premier de la kin\u00e9sith\u00e9rapie est d&rsquo;entretenir les capacit\u00e9s motrices et la verticalit\u00e9. Il s&rsquo;agit du traitement fondamental de l&rsquo;Ost\u00e9og\u00e9n\u00e8se Imparfaite, avec pour objectifs : <\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>maintenir la qualit\u00e9 musculaire<\/li>\n\n\n\n<li>entretenir la verticalisation (\u00e9viter les r\u00e9tractions de la station assise en fauteuil)<\/li>\n\n\n\n<li>favoriser les volumes respiratoires<\/li>\n\n\n\n<li>Accompagner et conseiller la famille<\/li>\n<\/ul>\n\n\n\n<p>Moyens r\u00e9\u00e9ducatifs :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>mobilisation<\/li>\n\n\n\n<li>Relaxateur de pression et kin\u00e9sith\u00e9rapie respiratoire<\/li>\n\n\n\n<li>Autor\u00e9\u00e9ducation<\/li>\n\n\n\n<li>Baln\u00e9oth\u00e9rapie (favorable +++)<\/li>\n\n\n\n<li>Des s\u00e9jours en SSR sont r\u00e9guli\u00e8rement n\u00e9cessaires, pour une remise en condition physique, en p\u00e9riode pr\u00e9-chirurgicale notamment avant chirurgie du rachis, ou en post-op\u00e9ratoire<\/li>\n\n\n\n<li><\/li>\n<\/ul>\n\n\n\n<p>La grande probl\u00e9matique r\u00e9side dans le comportement et l\u2019hygi\u00e8ne de vie des patients et de leurs familles, qui ont tendance \u00e0 surprot\u00e9ger le patient, \u00e0 limiter la motricit\u00e9 par peur d&rsquo;une fracture. Or, il est pr\u00e9f\u00e9rable que l&rsquo;enfant soit actif et \u00ab\u00a0se casse\u00a0\u00bb, plut\u00f4t qu&rsquo;il ne bouge pas du tout. Un enfant qui bouge aura finalement moins de fracture que celui qui ne bouge pas&#8230;<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<p>C\u2019est ici que la kin\u00e9sith\u00e9rapie intervient de mani\u00e8re essentielle\u00a0: il est primordial que les enfants atteint d\u2019OI maintienne une qualit\u00e9 musculaire suffisante pour r\u00e9duire au mieux le risque de fracture. Les contraintes appliqu\u00e9es doivent \u00eatre adapt\u00e9es, et sont essentiellement fonction du ressenti du patient. Certains patients peuvent r\u00e9aliser un v\u00e9ritable programme de Pr\u00e9paration Physique.<\/p>\n\n\n\n<p>Il est important de noter que si le risque de fracture est pr\u00e9sent, tout mouvement n\u2019entrainera pas forc\u00e9ment une fracture. Le kin\u00e9sith\u00e9rapeute doit donc se \u00ab\u00a0d\u00e9tacher\u00a0\u00bb de ce risque. <\/p>\n\n\n\n<p>\u00ab\u00a0Mieux vaut 25 bonnes fractures que 200 mauvaises\u00a0\u00bb.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\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=\"Ost\u00e9ogen\u00e8se imparfaite : La prise en charge   ( 8:38 )\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/iTFLCBHShu8?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p>Les patients OI sont hyperlaxes, ce qui complique l\u2019objectif r\u00e9\u00e9ducatif de stabilisation articulaire. La mise en place de protection, par des attelles, est parfois n\u00e9cessaire.<\/p>\n\n\n\n<p>On diff\u00e9rencie 2 types de r\u00e9\u00e9ducation :<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<ul class=\"wp-block-list\">\n<li>En centre\u00a0: en pr\u00e9-op\u00e9ratoire, en post-op\u00e9ratoire, ou pour une remise en forme ponctuelle.<\/li>\n\n\n\n<li>En lib\u00e9ral\u00a0: il y a une alternance de p\u00e9riodes aig\u00fces, de phases d\u2019immobilisation (il y a alors maintien de la r\u00e9\u00e9ducation des autres membres, des fonctions respiratoires&#8230;), avec un entretien \u00ab\u00a0psychologique\u00a0\u00bb pour \u00e9viter la perte de motivation. Il est primordial de d\u00e9finir les modalit\u00e9s d\u2019une activit\u00e9 physique adapt\u00e9e (intensit\u00e9, rythme, contenu, outil de suivi), conseiller, orienter ou diriger une pratique sportive adapt\u00e9e.<\/li>\n<\/ul>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\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=\"Ost\u00e9ogen\u00e8se Imparfaite et activit\u00e9 physique adapt\u00e9e -  T\u00e9moignages\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/cl2vcbRok1Q?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p>Il n\u2019y a pas de protocole type de r\u00e9\u00e9ducation, le contenu doit \u00eatre co-construit avec les patients, en faisant preuve d\u2019imagination, de recherche, en tenant compte de la fragilit\u00e9 du patient, selon les op\u00e9rations d\u00e9j\u00e0 effectu\u00e9es ou non. La charge est augment\u00e9e progressivement. Certains patients peuvent r\u00e9aliser de v\u00e9ritables s\u00e9ances de pr\u00e9paration physique.<\/p>\n\n\n\n<p>Les patients sont ceux qui connaissent le mieux leurs propres fragilit\u00e9s, leurs possibilit\u00e9s et leurs limites. Cette limite est fine, il est important de d\u00e9finir les risques avec le patient, et son niveau d\u2019acceptation.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\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=\"Ost\u00e9ogen\u00e8se Imparfaite et activit\u00e9 physique adapt\u00e9e - selon  Marie\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/sa71mIZVUKk?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\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=\"Ost\u00e9ogen\u00e8se Imparfaite et activit\u00e9 physique adapt\u00e9e - selon Co\u0302me\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/EOWMn8ZYb14?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\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=\"Ost\u00e9ogen\u00e8se imparfaite , t\u00e9moignage Patient\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/qbtpJIK1wyQ?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading has-white-color has-text-color has-background has-link-color has-large-font-size wp-elements-57274218c9a454b4186892f75ef875d8\" style=\"background-color:#237585\">Ressources compl\u00e9mentaires<\/h2>\n\n\n\n<p><a href=\"https:\/\/maladiesrares-necker.aphp.fr\/moc\/\" target=\"_blank\" rel=\"noreferrer noopener\">Centre de r\u00e9f\u00e9rence des maladies osseuses constitutionnelles (MOC)<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/www.filiere-oscar.fr\/\" target=\"_blank\" rel=\"noreferrer noopener\">OSCAR fili\u00e8re maladies rares<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/www.aoi.asso.fr\/\" target=\"_blank\" rel=\"noreferrer noopener\">Association de l\u2019Ost\u00e9og\u00e9n\u00e8se Imparfaite<\/a> (Association de patients)<\/p>\n\n\n\n<p><a href=\"https:\/\/vmov.assoconnect.com\/page\/820818-presentation\" target=\"_blank\" rel=\"noreferrer noopener\">Association\u00a0Vaincre la\u00a0Maladie des\u00a0Os de\u00a0Verre<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>L\u2019ost\u00e9ogen\u00e8se imparfaite, ou maladie \u00ab des os de verre \u00bb, est une affection g\u00e9n\u00e9tique, caract\u00e9ris\u00e9e par une fragilit\u00e9 osseuse et une faible masse osseuse \u00e0 l\u2019origine de fractures \u00e0 r\u00e9p\u00e9tition, survenant \u00e0 la suite de traumatismes b\u00e9nins.<br \/>\nLa kin\u00e9sith\u00e9rapie est fondamentale dans la prise en charge de l&rsquo;OI.<\/p>\n","protected":false},"author":109,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"content-type":"","_uag_custom_page_level_css":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center 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R\u00e9\u00e9ducation - AFKP\" \/>\n<meta property=\"og:description\" content=\"L\u2019ost\u00e9ogen\u00e8se imparfaite, ou maladie \u00ab des os de verre \u00bb, est une affection g\u00e9n\u00e9tique, caract\u00e9ris\u00e9e par une fragilit\u00e9 osseuse et une faible masse osseuse \u00e0 l\u2019origine de fractures \u00e0 r\u00e9p\u00e9tition, survenant \u00e0 la suite de traumatismes b\u00e9nins. 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