{"id":49153,"date":"2024-10-31T07:47:09","date_gmt":"2024-10-31T11:47:09","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/prendre-soin-de-soi-avec-ecd\/"},"modified":"2025-05-03T11:41:09","modified_gmt":"2025-05-03T15:41:09","slug":"prendre-soin-de-soi-avec-ecd","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/fr\/prendre-soin-de-soi-avec-ecd\/","title":{"rendered":"Prendre soin de soi avec ECD?"},"content":{"rendered":"<p>[et_pb_section fb_built=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_image=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png\u00a0\u00bb background_position=\u00a0\u00bbbottom_center\u00a0\u00bb background_vertical_offset=\u00a0\u00bb20%\u00a0\u00bb custom_padding=\u00a0\u00bb20px||20px||true|false\u00a0\u00bb background_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb background_position_tablet=\u00a0\u00bbbottom_right\u00a0\u00bb background_position_phone=\u00a0\u00bbcenter_right\u00a0\u00bb global_module=\u00a0\u00bb28071&Prime; 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_dynamic_attributes=\u00a0\u00bbtitle\u00a0\u00bb _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_font=\u00a0\u00bb&#8211;et_global_heading_font|300|||||||\u00a0\u00bb title_text_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb title_font_size=\u00a0\u00bb40px\u00a0\u00bb custom_margin=\u00a0\u00bb||3px|||\u00a0\u00bb title_font_size_tablet=\u00a0\u00bb\u00a0\u00bb title_font_size_phone=\u00a0\u00bb25px\u00a0\u00bb title_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_heading][et_pb_button button_text=\u00a0\u00bbContactez nous\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb15px\u00a0\u00bb button_text_color=\u00a0\u00bb#C02E43&Prime; button_bg_color=\u00a0\u00bbrgba(10,22,64,0.53)\u00a0\u00bb button_border_width=\u00a0\u00bb0px\u00a0\u00bb button_icon=\u00a0\u00bb&#xe60f;||divi||400&Prime; button_icon_color=\u00a0\u00bb#C02E43&Prime; button_icon_placement=\u00a0\u00bbleft\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb filter_opacity__hover_enabled=\u00a0\u00bbon|hover\u00a0\u00bb filter_opacity__hover=\u00a0\u00bb70%\u00a0\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; admin_label=\u00a0\u00bbsection\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb2_5,3_5&Prime; admin_label=\u00a0\u00bbrang\u00e9e\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; background_size=\u00a0\u00bbinitial\u00a0\u00bb background_position=\u00a0\u00bbtop_left\u00a0\u00bb background_repeat=\u00a0\u00bbrepeat\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb2_5&Prime; _builder_version=\u00a0\u00bb4.16&Prime; custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/Picture144.jpg\u00a0\u00bb title_text=\u00a0\u00bbImage144&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\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\u00bb4.16&Prime; custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_text admin_label=\u00a0\u00bbText\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; background_size=\u00a0\u00bbinitial\u00a0\u00bb background_position=\u00a0\u00bbtop_left\u00a0\u00bb background_repeat=\u00a0\u00bbrepeat\u00a0\u00bb hover_enabled=\u00a0\u00bb0&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb sticky_enabled=\u00a0\u00bb0&Prime;]<\/p>\n<h3>Self-Care<\/h3>\n<p>A diagnosis of Erdheim-Chester Disease (ECD) typically comes as a shock to most patients, sometimes after a roller coaster of emotions during a long diagnostic journey.\u00a0 Patients are encouraged to process the diagnosis and determine the best way forward.<\/p>\n<p>As a patient, you are encouraged to:<\/p>\n<ul>\n<li><strong>Find ways to relax.<\/strong> When you need time to recharge, find a comfortable and enjoyable place.\u00a0 Take time for yourself, time to do something you enjoy.\u00a0 This could be reading, listening to music, journaling, spending time with those you love, playing a game, or doing\u00a0whatever allows you to relax and be calm.<\/li>\n<li><strong>Maintain your social connections.<\/strong> Stay in touch with your friends and family.\u00a0 Continue with your social activities as you\u2019ve always done when possible.\u00a0 Phone calls and video chats are also great ways to stay in contact with those you enjoy.\u00a0 If someone offers to help you, allow them to do so.\u00a0 If someone indicates they want to help you\u00a0but\u00a0don\u2019t know how, suggest ways they could help with shipping, running errands, or attending to those small home chores.<\/li>\n<li><strong>Consider your mental health.<\/strong> Talk with your doctor about how you feel.\u00a0 If you feel depressed or anxious, tell your medical provider.\u00a0 These feelings are not uncommon for ECD patients, and your doctor may be able to help.\u00a0However, you may need to initiate the subject if your doctor doesn\u2019t.<\/li>\n<li><strong>Make time for physical activity<\/strong>. Staying active is good for everyone and can help reduce stress. Do what you can and be sure to keep safe. If necessary, adapt what you enjoy doing for exercise. Talk to your medical team about possible physical (physio) therapy to help you with balance issues.<\/li>\n<li><strong>Maintain a healthy diet.<\/strong> Eating nutritious foods helps your body to work its best. Talk to your healthcare team if you are uncertain about what diet to follow.\u00a0 Most doctors suggest a whole-food diet that includes fruits, vegetables, whole grains, lean protein, nuts, and beans.<\/li>\n<li><strong>Get plenty of sleep. <\/strong>Good quality sleep is important for everyone.\u00a0 Talk with your doctor if you are having difficulty going to sleep or staying asleep.<\/li>\n<li><strong>Be open to new activities.<\/strong> Life changes often require us to change.\u00a0 Look for new opportunities.\u00a0 For instance, you can get involved with the ECD Global Alliance!\u00a0 Join a <a href=\"https:\/\/www.erdheim-chester.org\/community-chats\/\">chat session<\/a> to talk with others affected by ECD, or plan to come to the <a href=\"https:\/\/www.erdheim-chester.org\/fr\/reunions-des-patients-et-des-familles-du-dpe\/\">annual ECD Conference<\/a> to meet new friends and learn more about ECD and how to best manage your health with ECD.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>[et_pb_dmb_breadcrumbs _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb body_text_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb body_font_size=\u00a0\u00bb12px\u00a0\u00bb link_text_color=\u00a0\u00bb#35A4BB\u00a0\u00bb custom_margin=\u00a0\u00bb||5px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb body_font_size_tablet=\u00a0\u00bb12px\u00a0\u00bb body_font_size_phone=\u00a0\u00bb10px\u00a0\u00bb body_font_size_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_dmb_breadcrumbs]Self-Care A diagnosis of Erdheim-Chester Disease (ECD) typically comes as a shock to most patients, sometimes after a roller [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-49153","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/49153","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=49153"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/49153\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=49153"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}