{"id":23319,"date":"2024-10-31T07:47:09","date_gmt":"2024-10-31T13:47:09","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?page_id=23319"},"modified":"2026-06-30T20:21:01","modified_gmt":"2026-07-01T01:21:01","slug":"self-care-with-ecd","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/he\/self-care-with-ecd\/","title":{"rendered":"Self-Care with ECD?"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png&#8221; background_position=&#8221;bottom_center&#8221; background_vertical_offset=&#8221;20%&#8221; custom_padding=&#8221;15px||15px||true|false&#8221; background_last_edited=&#8221;on|desktop&#8221; background_position_tablet=&#8221;bottom_right&#8221; background_position_phone=&#8221;center_right&#8221; global_module=&#8221;28071&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_heading title=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@&#8221; _builder_version=&#8221;4.27.4&#8243; _dynamic_attributes=&#8221;title&#8221; _module_preset=&#8221;default&#8221; title_font=&#8221;&#8211;et_global_heading_font|300|||||||&#8221; title_text_color=&#8221;#FFFFFF&#8221; title_font_size=&#8221;40px&#8221; custom_margin=&#8221;||3px|||&#8221; title_font_size_tablet=&#8221;&#8221; title_font_size_phone=&#8221;25px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_heading][et_pb_button button_url=&#8221;\/contact-us\/&#8221; button_text=&#8221;Contact Us&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;15px&#8221; button_text_color=&#8221;#C02E43&#8243; button_bg_color=&#8221;rgba(10,22,64,0.53)&#8221; button_border_width=&#8221;0px&#8221; button_icon=&#8221;&#xe60f;||divi||400&#8243; button_icon_color=&#8221;#C02E43&#8243; button_icon_placement=&#8221;left&#8221; button_on_hover=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; filter_opacity__hover_enabled=&#8221;on|hover&#8221; filter_opacity__hover=&#8221;70%&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;section&#8221; _builder_version=&#8221;4.16&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;1_2,1_2&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px|0px|false|false&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; locked=&#8221;off&#8221; sticky_enabled=&#8221;0&#8243;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#F2F2F2&#8243; custom_padding=&#8221;40px|30px|40px|30px|true|false&#8221; border_radii=&#8221;on|20px|20px|20px|20px&#8221; box_shadow_style=&#8221;preset2&#8243; box_shadow_vertical=&#8221;4px&#8221; box_shadow_blur=&#8221;8px&#8221; box_shadow_color=&#8221;rgba(0,0,0,0.1)&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;-10px||||false|false&#8221; custom_padding=&#8221;0px||||false|false&#8221; hover_enabled=&#8221;0&#8243; border_radii=&#8221;on|20px|20px|20px|20px&#8221; border_width_all=&#8221;1px&#8221; border_color_all=&#8221;#adadad&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<div class=\"ecd-video-embed\">\n<div class=\"ecd-video-wrapper\">\n<p><iframe loading=\"lazy\" width=\"560\" height=\"315\" src=\"https:\/\/www.youtube.com\/embed\/videoseries?si=1Kur5A_0jWJ0nzfU&amp;list=PLd9i5JBvapc68HiPUt2SRb6ajkUGNKJp0\" title=\"YouTube video player\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||0px||false|false&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p><span>The ECDGA YouTube playlist, <\/span><strong><span>&#8220;Quality of Life and Survivorship by ECDGA,&#8221;<\/span><\/strong><span> includes 42 videos featuring medical professionals discussing Erdheim-Chester Disease (ECD) treatments, quality of life, survivorship, and long-term patient care.<\/span><\/p>\n<p>[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/youtube.com\/playlist?list=PLd9i5JBvapc68HiPUt2SRb6ajkUGNKJp0&#038;si=1Kur5A_0jWJ0nzfU&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Watch Playlist&#8221; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;16px&#8221; button_bg_color=&#8221;#C02E43&#8243; button_border_radius=&#8221;8px&#8221; button_font=&#8221;|600|||||||&#8221; button_use_icon=&#8221;off&#8221; transform_translate_linked__hover=&#8221;off&#8221; custom_padding=&#8221;16px|30px|16px|30px|true|true&#8221; hover_enabled=&#8221;0&#8243; custom_css_main_element=&#8221;width: 100%;||text-align: center;&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; transform_styles__hover_enabled=&#8221;on|hover&#8221; transform_scale__hover_enabled=&#8221;on|desktop&#8221; transform_translate__hover_enabled=&#8221;on|hover&#8221; transform_rotate__hover_enabled=&#8221;on|desktop&#8221; transform_skew__hover_enabled=&#8221;on|desktop&#8221; transform_origin__hover_enabled=&#8221;on|desktop&#8221; transform_translate__hover=&#8221;0px|-3px&#8221; button_text_color__hover_enabled=&#8221;on|hover&#8221; button_text_color__hover=&#8221;#FFFFFF&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;Text&#8221; _builder_version=&#8221;4.27.6&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Self-Care<\/h3>\n<blockquote>\n<p>Purpose of this page<\/p>\n<p>Gentle, practical ideas to help you care for yourself while living with Erdheim\u2011Chester Disease (ECD). This page is for people with ECD and those who support them. It complements not replaces advice from your medical team.<\/p>\n<\/blockquote>\n<h3>After an ECD diagnosis: take a breath<\/h3>\n<p>A new diagnosis can feel overwhelming. It\u2019s normal to have many emotions\u2014relief at finally having an answer, worry, anger, grief, or hope. Give yourself time. It helps to:<\/p>\n<ul>\n<li><strong>Write down questions<\/strong>as they come to you and bring them to appointments.<\/li>\n<li><strong>Choose a point person<\/strong>(friend\/family) who can help track information and logistics.<\/li>\n<li><strong>Ask your care team<\/strong>how urgently treatment decisions need to be made\u2014many choices allow time to learn and reflect.<\/li>\n<\/ul>\n<blockquote>\n<p>Tip: Consider a simple folder (paper or digital) to keep scans, labs, medications, and contacts in one place.<\/p>\n<\/blockquote>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<h2>The 6 pillars of day-to-day self-care<\/h2>\n<h3>1) Caring for your mind<\/h3>\n<ul>\n<li><strong>Talk openly<\/strong> with your clinicians about mood, anxiety, sleep, and stress. These are part of ECD care.<\/li>\n<li><strong>Try brief, regular practices<\/strong> that calm the nervous system: slow breathing, mindfulness, prayer\/faith practices, journaling, music, or nature time.<\/li>\n<li><strong>Ask for formal support<\/strong> (counseling, peer groups). Many people feel better after just a few sessions.<\/li>\n<\/ul>\n<h3>2) Staying connected<\/h3>\n<ul>\n<li>Keep up with <strong>people and activities that energize you<\/strong>\u2014in person, by phone, or video.<\/li>\n<li>Let others help. If someone offers but isn\u2019t sure how, suggest specific tasks: meals, rides, childcare\/pet care, or taking notes in appointments.<\/li>\n<li>Consider joining the <strong>ECD Global Alliance community<\/strong>\u2014monthly educational webinars and an annual patient &amp; family conference help you hear from clinicians and peers and feel less alone. (See Get connected)<\/li>\n<\/ul>\n<h3>3) Moving your body\u2014safely<\/h3>\n<ul>\n<li><strong>Any movement counts.<\/strong> Start where you are and build gradually. Many people feel less fatigue, anxiety, and pain when they move more.<\/li>\n<li>Aim\u2014if your team agrees\u2014for <strong>150\u2013300 minutes\/week of moderate activity<\/strong> (like brisk walking) or <strong>75\u2013150 minutes\/week vigorous<\/strong>, plus <strong>2 days\/week<\/strong> of gentle <strong>strength exercises<\/strong>; adapt to your energy and balance.<\/li>\n<li>If you have <strong>balance issues, bone pain, neuropathy, heart or lung involvement<\/strong>, ask for a <strong>physical\/occupational therapy<\/strong> referral to tailor a safe plan.<\/li>\n<\/ul>\n<h3>4) Nourishing your body<\/h3>\n<ul>\n<li>If possible, base meals on <strong>vegetables, fruits, whole grains, beans, nuts\/seeds<\/strong>, and <strong>lean proteins<\/strong> (fish\/poultry\/plant proteins).<\/li>\n<li>If eating is hard (poor appetite, nausea, taste changes), ask for a referral to a <strong>Registered Dietitian Nutritionist (RDN)<\/strong> experienced in oncology.<\/li>\n<li><strong>Hydration matters<\/strong>, especially if you have increased urination or are on medicines that affect fluids. Ask your team about your personal fluid and salt targets.<\/li>\n<\/ul>\n<h3>5) Protecting your sleep<\/h3>\n<ul>\n<li>Keep a <strong>consistent sleep\/wake schedule<\/strong>.<\/li>\n<li>Make your room <strong>dark, quiet, and cool<\/strong>; limit screens for 30\u201360 minutes before bed.<\/li>\n<li>If sleep problems persist, talk with your clinician\u2014treatments and behavioral strategies can help.<\/li>\n<\/ul>\n<h3>6) Preventing infections and other health conditions<\/h3>\n<ul>\n<li>Wash hands or use sanitizer regularly; avoid close contact with sick people.<\/li>\n<li>Ask your team about recommended <strong>vaccines<\/strong> (such as influenza, COVID-19, pneumococcal, shingles, and RSV for eligible adults).<\/li>\n<\/ul>\n<p>Stay on top of your routine preventative health screenings (e.g., colonoscopy, mammogram, heart health, etc.).<\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>ECD\u2011specific tips to discuss with your team<\/h2>\n<ul>\n<li><strong>Bone pain &amp; mobility:<\/strong>A tailored activity plan, physical therapy, and pain strategies can help you stay active while protecting your bones and balance.<\/li>\n<li><strong>Endocrine symptoms:<\/strong>Excess thirst\/urination or heat\/cold intolerance may signal pituitary or endocrine involvement\u2014report these early.<\/li>\n<li><strong>Heart, kidney, or lung involvement:<\/strong>Your clinicians may adjust activity goals and fluid\/salt intake, and monitor you more closely.<\/li>\n<li><strong>Treatment side effects:<\/strong>Targeted therapies (BRAF\/MEK inhibitors), interferon, steroids, or other agents may affect skin, vision, joints, mood, or infection risk. Share all side effects promptly small dose changes or supportive meds can make a big difference.<\/li>\n<\/ul>\n<blockquote>\n<p>Always personalize. Because ECD affects people differently, your care plan should reflect your organs involved, current treatment, other medical conditions, and day\u2011to\u2011day life.<\/p>\n<\/blockquote>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Get connected with ECD Global Alliance<\/h2>\n<ul>\n<li><strong>Community &amp; education:<\/strong> Join monthly webinars and connect with peers around the world.<\/li>\n<li><strong>Annual Patient &amp; Family Conference:<\/strong> Learn from experts and meet fellow patients and caregivers.<\/li>\n<li><strong>Share your voice:<\/strong> Research registries and studies often welcome patient participation.<\/li>\n<\/ul>\n<p>Visit the ECD Global Alliance website and follow the events calendar to see what\u2019s coming up.<\/p>\n<h2>Practical tools you can use today<\/h2>\n<ul>\n<li><strong>One-page medical summary<\/strong> (diagnosis, organs involved, current meds, allergies, emergency contacts). Keep a copy in your wallet and phone.<\/li>\n<li><strong>Symptom &amp; energy tracker<\/strong> (paper or app) to notice patterns and prepare for visits.<\/li>\n<li><strong>Questions for my next visit<\/strong><\/li>\n<li><strong>Support list<\/strong> (names\/numbers for rides, meals, childcare, pet care, house tasks).<\/li>\n<\/ul>\n<h2>Words from our community<\/h2>\n<blockquote>\n<p>\u201cIt took time, but finding my pace\u2014small walks, better sleep, and people who get it\u2014made the biggest difference.\u201d<\/p>\n<\/blockquote>\n<h2>Important reminders<\/h2>\n<ul>\n<li>Information here is <strong>educational<\/strong>. Always follow the advice of your own medical team.<\/li>\n<li>If you think you\u2019re having a <strong>medical emergency<\/strong>, call your local emergency number.<\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<strong>Last Updated:<\/strong>\u00a003\/17\/2026[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The ECDGA YouTube playlist, &#8220;Quality of Life and Survivorship by ECDGA,&#8221; includes 42 videos featuring medical professionals discussing Erdheim-Chester Disease (ECD) treatments, quality of life, survivorship, and long-term patient care.Self-Care [&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":"<h3>Self-Care<\/h3>\r\nA 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.&nbsp; Patients are encouraged to process the diagnosis and determine the best way forward.\r\n\r\nAs a patient, you are encouraged to:\r\n<ul>\r\n \t<li><strong>Find ways to relax.<\/strong> When you need time to recharge, find a comfortable and enjoyable place.&nbsp; Take time for yourself, time to do something you enjoy.&nbsp; This could be reading, listening to music, journaling, spending time with those you love, playing a game, or doing&nbsp;whatever allows you to relax and be calm.<\/li>\r\n \t<li><strong>Maintain your social connections.<\/strong> Stay in touch with your friends and family.&nbsp; Continue with your social activities as you\u2019ve always done when possible.&nbsp; Phone calls and video chats are also great ways to stay in contact with those you enjoy.&nbsp; If someone offers to help you, allow them to do so.&nbsp; If someone indicates they want to help you&nbsp;but&nbsp;don\u2019t know how, suggest ways they could help with shipping, running errands, or attending to those small home chores.<\/li>\r\n \t<li><strong>Consider your mental health.<\/strong> Talk with your doctor about how you feel.&nbsp; If you feel depressed or anxious, tell your medical provider.&nbsp; These feelings are not uncommon for ECD patients, and your doctor may be able to help.&nbsp;However, you may need to initiate the subject if your doctor doesn\u2019t.&nbsp;<\/li>\r\n \t<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>\r\n \t<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.&nbsp; Most doctors suggest a whole-food diet that includes fruits, vegetables, whole grains, lean protein, nuts, and beans.<\/li>\r\n \t<li><strong>Get plenty of sleep. <\/strong>Good quality sleep is important for everyone.&nbsp; Talk with your doctor if you are having difficulty going to sleep or staying asleep.<\/li>\r\n \t<li><strong>Be open to new activities.<\/strong> Life changes often require us to change.&nbsp; Look for new opportunities.&nbsp; For instance, you can get involved with the ECD Global Alliance!&nbsp; Join a <a href=\"https:\/\/www.erdheim-chester.org\/chat-sessions\/\">chat session<\/a> to talk with others affected by ECD, or plan to come to the <a href=\"https:\/\/www.erdheim-chester.org\/ecd-patient-family-gathering\/\">annual ECD Conference<\/a> to meet new friends and learn more about ECD and how to best manage your health with ECD.<\/li>\r\n<\/ul>\r\n&nbsp;\r\n<p style=\"font-weight: 400;\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/Picture144.jpg\"><img class=\"aligncenter wp-image-23320 size-full\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/Picture144.jpg\" alt=\"\" width=\"800\" height=\"800\"><\/a><\/p>","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-23319","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages\/23319","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=23319"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages\/23319\/revisions"}],"predecessor-version":[{"id":166321,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages\/23319\/revisions\/166321"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=23319"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}