{"id":372,"date":"2024-08-20T18:55:18","date_gmt":"2024-08-20T18:55:18","guid":{"rendered":"https:\/\/deepdeeousstg.wpenginepowered.com\/encephalopathies-developpementales-et-epileptiques\/"},"modified":"2026-04-16T17:31:36","modified_gmt":"2026-04-16T17:31:36","slug":"encephalopathies-developpementales-et-epileptiques","status":"publish","type":"page","link":"https:\/\/deepdeestudy.global\/fr\/encephalopathies-developpementales-et-epileptiques\/","title":{"rendered":"Enc\u00e9phalopathies d\u00e9veloppementales et \u00e9pileptiques"},"content":{"rendered":"<p>[et_pb_section fb_built=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_image=\u00a0\u00bbhttps:\/\/deepdeestudy.global\/wp-content\/uploads\/2024\/10\/dee-background_2.png\u00a0\u00bb background_size=\u00a0\u00bbcontain\u00a0\u00bb background_position=\u00a0\u00bbtop_center\u00a0\u00bb custom_padding=\u00a0\u00bb20px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb3.4vw||0px||false|false\u00a0\u00bb custom_margin_tablet=\u00a0\u00bb0vw||0px||false|false\u00a0\u00bb custom_margin_phone=\u00a0\u00bb0vw||0px||false|false\u00a0\u00bb custom_margin_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/deepdeestudy.global\/wp-content\/uploads\/2024\/10\/dee-turtle.webp\u00a0\u00bb title_text=\u00a0\u00bbdee-turtle\u00a0\u00bb align=\u00a0\u00bbright\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb30%\u00a0\u00bb width_tablet=\u00a0\u00bb30%\u00a0\u00bb width_phone=\u00a0\u00bb40%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb max_width=\u00a0\u00bb240px\u00a0\u00bb custom_margin=\u00a0\u00bb||0px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin_tablet=\u00a0\u00bb\u00a0\u00bb custom_margin_phone=\u00a0\u00bb\u00a0\u00bb custom_margin_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb||||false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb||0px||false|false\u00a0\u00bb custom_padding_phone=\u00a0\u00bb20px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_heading title=\u00a0\u00bbQU\u2019EST-CE QU\u2019UNE ENC\u00c9PHALOPATHIE D\u00c9VELOPPEMENTALE ET \u00c9PILEPTIQUE (EDE)\u202f?\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_font=\u00a0\u00bb|700|||||||\u00a0\u00bb title_text_align=\u00a0\u00bbcenter\u00a0\u00bb title_text_color=\u00a0\u00bb#1793D1&Prime; title_font_size=\u00a0\u00bb32px\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb custom_margin_tablet=\u00a0\u00bb||10px||false|false\u00a0\u00bb custom_margin_phone=\u00a0\u00bb||||false|false\u00a0\u00bb custom_margin_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb||||false|false\u00a0\u00bb title_font_size_tablet=\u00a0\u00bb32px\u00a0\u00bb title_font_size_phone=\u00a0\u00bb\u00a0\u00bb title_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_heading][et_pb_divider color=\u00a0\u00bb#1793D1&Prime; divider_weight=\u00a0\u00bb1.5px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb560px\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb custom_margin=\u00a0\u00bb10px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_divider][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; use_custom_gutter=\u00a0\u00bbon\u00a0\u00bb gutter_width=\u00a0\u00bb2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb1100px\u00a0\u00bb custom_margin=\u00a0\u00bb||||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_3_font=\u00a0\u00bb|700|||||||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h3>Les enc\u00e9phalopathies \u00e9pileptiques et d\u00e9veloppementales (EDE) sont une forme grave d\u2019\u00e9pilepsie qui affecte l\u2019apprentissage et le d\u00e9veloppement et qui commence souvent pendant la petite enfance ou l\u2019enfance. Le syndrome de Lennox-Gastaut (SLG) est un exemple d\u2019EDE, mais de nombreux autres diagnostics entrent dans ce spectre.<br \/>Pour les personnes touch\u00e9es et leur famille, comprendre les sympt\u00f4mes de l&rsquo;EDE peut prendre du temps et ce parcours peut \u00eatre difficile. <\/h3>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text ul_item_indent=\u00a0\u00bb35px\u00a0\u00bb ul_item_indent_tablet=\u00a0\u00bb30px\u00a0\u00bb ul_item_indent_phone=\u00a0\u00bb20px\u00a0\u00bb ul_item_indent_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb link_font=\u00a0\u00bb||||on||||\u00a0\u00bb link_text_color=\u00a0\u00bb#1793D1&Prime; header_3_font=\u00a0\u00bb|700|||||||\u00a0\u00bb custom_margin=\u00a0\u00bb||0px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb hover_enabled=\u00a0\u00bb0&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb link_text_color__hover_enabled=\u00a0\u00bbon|hover\u00a0\u00bb link_text_color__hover=\u00a0\u00bb#213A70&Prime; sticky_enabled=\u00a0\u00bb0&Prime;]<\/p>\n<h3>L&rsquo;<a href=\"https:\/\/www.epilepsy.com\/what-is-epilepsy\/syndromes\/developmental-and-epileptic-encephalopathy#What-is-developmental-and-epileptic-encephalopathy-(DEE)?\" target=\"_blank\" rel=\"noopener\">Epilepsy Foundation<\/a> mentionne d\u2019autres sympt\u00f4mes li\u00e9s \u00e0 la maladie, tels que\u202f:<\/h3>\n<ul>\n<li>les retards de comportement et de d\u00e9veloppement ;<\/li>\n<li>les probl\u00e8mes de mouvement et d\u2019\u00e9quilibre ;<\/li>\n<li>et les probl\u00e8mes de retard de langage et d\u2019\u00e9locution, entre autres.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#F5F8FA\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb10px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_font=\u00a0\u00bb||||||||\u00a0\u00bb header_font=\u00a0\u00bb||||||||\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb max_width=\u00a0\u00bb800px\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb custom_margin=\u00a0\u00bb||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2>Les d\u00e9fis pos\u00e9s par l\u2019EDE peuvent \u00eatre particuli\u00e8rement difficiles \u00e0 g\u00e9rer et n\u00e9cessitent des soins et des connaissances sp\u00e9cialis\u00e9s. Il est important de reconna\u00eetre que chaque histoire est unique et que le fait de chercher de l\u2019aide et de cr\u00e9er du lien peut faire une grande diff\u00e9rence. <\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb background_enable_image=\u00a0\u00bboff\u00a0\u00bb background_size=\u00a0\u00bbcontain\u00a0\u00bb background_position=\u00a0\u00bbtop_center\u00a0\u00bb background_vertical_offset=\u00a0\u00bb-7%\u00a0\u00bb custom_padding=\u00a0\u00bb||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb2_5,3_5&Prime; make_equal=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb custom_margin=\u00a0\u00bb||||false|false\u00a0\u00bb custom_css_main_element=\u00a0\u00bbalign-items: center;\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb2_5&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/deepdeestudy.global\/wp-content\/uploads\/2024\/10\/dee-fish-seahorse-circle.webp\u00a0\u00bb title_text=\u00a0\u00bbdee-fish-seahorse-circle\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb340px\u00a0\u00bb module_alignment=\u00a0\u00bbright\u00a0\u00bb module_alignment_tablet=\u00a0\u00bbcenter\u00a0\u00bb module_alignment_phone=\u00a0\u00bbcenter\u00a0\u00bb module_alignment_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00a0\u00bb3_5&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#1793D1&Prime; header_3_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_3_text_color=\u00a0\u00bb#1793D1&Prime; custom_margin=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2>Le parcours des enc\u00e9phalopathies d\u00e9veloppementales et \u00e9pileptiques peut parfois sembler sem\u00e9 d\u2019emb\u00fbches, mais il est essentiel que les familles sachent qu\u2019elles ne sont pas seules.<\/h2>\n<p>[\/et_pb_text][et_pb_divider color=\u00a0\u00bb#1793D1&Prime; divider_weight=\u00a0\u00bb1.5px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb99%\u00a0\u00bb module_alignment=\u00a0\u00bbleft\u00a0\u00bb custom_margin=\u00a0\u00bb10px||0px||false|false\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_divider][et_pb_text _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb link_font=\u00a0\u00bb||||on||||\u00a0\u00bb link_text_color=\u00a0\u00bb#1793D1&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb link_text_color__hover_enabled=\u00a0\u00bbon|hover\u00a0\u00bb link_text_color__hover=\u00a0\u00bb#213A70&Prime;]<\/p>\n<p>Il existe une communaut\u00e9 croissante de soignants et de personnes confront\u00e9es \u00e0 des d\u00e9fis similaires et des ressources familiales sont disponibles chez <a href=\"https:\/\/deepconnections.net\/\" target=\"_blank\" rel=\"noopener\">DEE-P Connections<\/a>. Des options th\u00e9rapeutiques sont \u00e0 l\u2019\u00e9tude pour am\u00e9liorer la qualit\u00e9 de vie des enfants et des adultes. <\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px||||false|false\u00a0\u00bb custom_padding_phone=\u00a0\u00bb0px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_3_font=\u00a0\u00bb|700|||||||\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb custom_margin=\u00a0\u00bb||0px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2>Ensemble, nous pouvons favoriser un environnement de soutien o\u00f9 le partage des exp\u00e9riences et des ressources peut permettre aux familles de traverser cette \u00e9preuve avec espoir et r\u00e9silience.<\/h2>\n<p>[\/et_pb_text][et_pb_button button_url=\u00a0\u00bb\/fr\/#eligibility\u00a0\u00bb button_text=\u00a0\u00bbContribuer \u00e0 la recherche sur l\u2019EDE\u00a0\u00bb button_alignment=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; 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_module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_font=\u00a0\u00bb|700||on|||||\u00a0\u00bb title_text_align=\u00a0\u00bbcenter\u00a0\u00bb custom_margin=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_heading][et_pb_heading title=\u00a0\u00bbParticiper \u00e0 une \u00e9tude clinique est une d\u00e9cision importante, mais c\u2019est aussi l\u2019occasion de nous rejoindre dans notre qu\u00eate pour faire avancer le traitement des enc\u00e9phalopathies d\u00e9veloppementales et \u00e9pileptiques.\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_level=\u00a0\u00bbh2&Prime; title_font=\u00a0\u00bb|700|||||||\u00a0\u00bb title_text_align=\u00a0\u00bbcenter\u00a0\u00bb title_text_color=\u00a0\u00bb#1793D1&Prime; title_font_size=\u00a0\u00bb26px\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb title_font_size_tablet=\u00a0\u00bb26px\u00a0\u00bb title_font_size_phone=\u00a0\u00bb22px\u00a0\u00bb title_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_heading][et_pb_divider color=\u00a0\u00bb#1793D1&Prime; divider_weight=\u00a0\u00bb1.5px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb90%\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb custom_margin=\u00a0\u00bb10px||20px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_divider][et_pb_text _builder_version=\u00a0\u00bb4.27.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>En participant \u00e0 la recherche clinique, votre proche jouera un r\u00f4le actif dans la d\u00e9finition des options th\u00e9rapeutiques pour l\u2019EDE et contribuera aux progr\u00e8s m\u00e9dicaux pour les g\u00e9n\u00e9rations actuelles et futures.<\/p>\n<p>La participation \u00e0 une \u00e9tude clinique ne pr\u00e9sente aucun avantage av\u00e9r\u00e9. Cependant, la participation \u00e0 l\u2019\u00e9tude DEEp OCEAN peut r\u00e9duire la fr\u00e9quence des crises convulsives pour les participants assign\u00e9s au groupe du m\u00e9dicament \u00e0 l\u2019\u00e9tude. Par ailleurs, les participants b\u00e9n\u00e9ficieront d\u2019une prise en charge m\u00e9dicale et d\u2019\u00e9valuations tout au long de l\u2019\u00e9tude, ainsi que de tests facultatifs visant \u00e0 identifier les mutations associ\u00e9es \u00e0 l\u2019EDE chez les participants.  <\/p>\n<p>La d\u00e9cision de participer est une d\u00e9cision personnelle qui d\u00e9pend enti\u00e8rement de vous et de votre proche. Il est essentiel de se sentir \u00e0 l\u2019aise et inform\u00e9(e) avant de participer \u00e0 une \u00e9tude clinique. 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