{"id":468,"date":"2024-01-27T15:01:07","date_gmt":"2024-01-27T14:01:07","guid":{"rendered":"https:\/\/gesed.org\/?post_type=mec-events&p=468"},"modified":"2024-02-09T11:45:03","modified_gmt":"2024-02-09T10:45:03","slug":"journee-dinformation-2024","status":"publish","type":"mec-events","link":"https:\/\/gesed.com\/index.php\/events\/journee-dinformation-2024\/","title":{"rendered":"Journ\u00e9e d’information 2024"},"content":{"rendered":"\t\t
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Journ\u00e9e annuelle d'information<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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En 2024, la journ\u00e9e d’information a eu lieu le samedi 6 avril, au CHRSM \u2013 site Meuse, Namur<\/p>\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\t\t<\/div>\n\t\t

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\u00a0<\/p>

La journ\u00e9e a d\u00e9but\u00e9 par la conf\u00e9rence de Mr Thierry Joiris<\/strong>, neuropsychologue et coordinateur du centre interdisciplinaire DOME \u00e0 Li\u00e8ge.\u00a0 Ses axes d\u2019expertise sont la douleur chronique et les troubles cognitifs.
Une \u00e9quipe interface de ce p\u00f4le de comp\u00e9tences SED est d\u00e9di\u00e9 au diagnostic et \u00e0 l\u2019accompagnement des enfants, adolescents et adultes atteints du SED.<\/p>

La scolarisation est d\u2019autant plus essentielle pour les enfants et adolescents atteints du Syndrome d\u2019Ehlers Danlos que de nombreuses pathologies les \u00e9loignent de l\u2019\u00e9cole et de la vie sociale.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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\u00a0<\/p>

L\u2019 ASBL ClassContact<\/strong> permet de connecter l\u2019enfant malade \u00e0 son \u00e9cole : suivi des cours et activit\u00e9s \u00e0 distance avec ses camarades de classe.
La mise en place n\u00e9cessite plusieurs \u00e9tapes :
\u00a0 \u00a0– \u00c9valuation de la situation d\u2019handicap.
\u00a0 \u00a0– D\u00e9finir les am\u00e9nagements raisonnables.
\u00a0 \u00a0– Formaliser ces am\u00e9nagements par \u00e9crit.
ClassContact pr\u00e9sent\u00e9 par Kath Sokal<\/strong>, permet la scolarisation des enfants et adolescents entre 5 ans et 20 ans, de la maternelle jusqu\u2019\u00e0 la fin du secondaire.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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\u00a0<\/p>

Ensuite Mme Sylvie Daubian-Delisle<\/strong> nous a pr\u00e9sent\u00e9 le Qi Gong, une voie vers l\u2019\u00e9quilibre et l\u2019harmonie.
Le Qi Gong vise \u00e0 ma\u00eetriser le souffle ainsi que l\u2019\u00e9nergie vitale et est issu de la m\u00e9decine chinoise.
Nous avons particip\u00e9 \u00e0 une s\u00e9ance d\u2019initiation.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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\u00a0<\/p>

L\u2019 apr\u00e8s-midi, le Dr Elisa Docampo<\/strong>, nous a pr\u00e9sent\u00e9 l\u2019aspect gyn\u00e9cologique des SED, les risques et le suivi obst\u00e9trique.
Dans la premi\u00e8re partie de sa pr\u00e9sentation, l\u2019aspect g\u00e9n\u00e9tique des SED a \u00e9t\u00e9 abord\u00e9 et ses cons\u00e9quences sur la grossesse.
Les g\u00e8nes mut\u00e9s ont \u00e9t\u00e9 identifi\u00e9s pour 12 des 13 sous-types mais l\u2019origine g\u00e9n\u00e9tique du SED hypermobile reste inconnue.
Lors d\u2019une f\u00e9condation in vitro, un diagnostic pr\u00e9implantatoire est requis afin d\u2019\u00e9viter la transmission d\u2019anomalie g\u00e9n\u00e9tique.
Et un diagnostic pr\u00e9natal est r\u00e9alis\u00e9 en cas de formes graves de SED.<\/p>

En cas de grossesse, les risques de complications sont nombreux et varient en fonction du sous-type.
Pour le SED cyphoscoliotique et le SED dermatosparaxis, formes rares du SED, un suivi individualis\u00e9 et adapt\u00e9 est n\u00e9cessaire.
Dans le cas du SED vasculaire la grossesse est \u00e0 haut risque.
Pour le SED classique, il y a des risques d\u2019insuffisance au niveau du col de l\u2019ut\u00e9rus.
La grossesse et l\u2019accouchement pour le SED hypermobile pr\u00e9sentent moins de risques.<\/p>\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\t\t<\/div>\n\t\t

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\u00a0<\/p>

Cette journ\u00e9e, tr\u00e8s dense et tr\u00e8s riche en contacts, s\u2019est termin\u00e9e dans la bonne humeur en participant activement \u00e0 la conf\u00e9rence de Mme Isabelle Purnode-Christiaens<\/strong> sur \u00ab Le rire est un tranquillisant sans effets secondaires\u00a0\u00bb.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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