{"id":17164,"date":"2020-06-02T16:16:05","date_gmt":"2020-06-02T16:16:05","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=17164"},"modified":"2020-06-02T16:16:05","modified_gmt":"2020-06-02T16:16:05","slug":"effects-of-a-rare-disease-beyond-symptoms-and-treatment","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/effects-of-a-rare-disease-beyond-symptoms-and-treatment\/","title":{"rendered":"Les cons\u00e9quences d'une maladie rare : au-del\u00e0 des sympt\u00f4mes et du traitement"},"content":{"rendered":"<p><span data-contrast=\"auto\">Facing a rare disease can seem like an uphill battle from time to time. The side effects of rare diseases, such as ECD are not only seen and felt from the disease itself or the treatments received. Many patients are faced with other effects that are not direct side-effects of the disease. Below are a few of these side effects and ways to help!&nbsp;<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">Social Isolation:&nbsp;<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"auto\">To an extent, the world is being urged to \u201cstay at home\u201d and isolate during the pandemic. This is familiar territory for rare disease families. A rare disease can isolate a patient and\/or a family member both physically and mentally. It can be difficult to connect with others who do not understand what you are going through or the unknowns that you are also facing.&nbsp;&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<\/ul>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"auto\">To help with social isolation, reach out to others with ECD! Connect with those who do understand what you are going through. Join a chat session, video chat, or if you are able &#8211; meet others that are local for coffee. You can even create your own weekly video chat!&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<\/ul>\n<p><span style=\"color: #2f92a7;\"><b>**The ECDGA would like to hear from our members! Take this quick survey about your interest in talking with others on a virtual platform:&nbsp;<\/b><span style=\"color: #000000;\"><a style=\"color: #000000;\" href=\"https:\/\/forms.gle\/KzzaUCfCqeoziXnq9\">Visual Chat with Peers? &#8211; Survey<\/a>&nbsp;<\/span><\/span><\/p>\n<p><b>Unpredictable<span data-contrast=\"auto\">&nbsp;Lifestyle:<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"auto\">Some patients may have had to make extreme lifestyle changes;&nbsp;<\/span><span data-contrast=\"auto\">(<\/span><span data-contrast=\"auto\">e.g., eating certain foods, exercising abilities, daily routine changes, vacation changes, forced to stop working, moving from your home, losing your ability to be self-sufficient, etc.<\/span><span data-contrast=\"auto\">)<\/span><span data-contrast=\"auto\">&nbsp; You may have been suddenly uprooted from a comfortable normal and forced to face a new, less predictable one.&nbsp; Depending on your specific situation, you may be facing this solely because of the COVID pandemic, or as a part of your ECD treatments, symptoms, or side-effects. This may leave you asking, \u201cWhat does tomorrow hold?\u201d<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"auto\">It is often hard trying to adjust to a new or unpredictable lifestyle. When a good change appears, accept it with grace. When a negative change is looming, if you can, start looking for alternatives before it actually happens. Change is constant, so we usually don\u2019t notice the little or the expected changes; it\u2019s when you are caught off-guard that you can get discombobulated. Despite the changes that are taking place in our world each and every day, keep moving forward!&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<\/ul>\n<p><b><span data-contrast=\"auto\">Loss of Friendships:<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"auto\">Friends and family can be incredibly supportive. However, in many instances, they can also be extremely intimidated when it comes to helping a sick loved one, and may feel so overwhelmed themselves and not know what to do. You may see many friendships drift to the wayside, not at the fault of either party. This can make your difficult situation even harder to handle.&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"auto\">To help encourage a healthy friendship after diagnosis try a few of these tips:<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span>\n<ul>\n<li><span data-contrast=\"auto\">Educate friends\/family about ECD.&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<li><span data-contrast=\"auto\">Take a close friend or relative to a doctor\u2019s appointment with you.&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<li><span data-contrast=\"auto\">If you need something from a friend, communicate it to them!&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<li><span data-contrast=\"auto\">Extend your circle to new friends!&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p aria-level=\"2\"><b><span data-contrast=\"none\">K<\/span><\/b><b><span data-contrast=\"none\">now that you are not alone!&nbsp;<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559738&quot;:40,&quot;335559739&quot;:240,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<p><i><span data-contrast=\"auto\">\u201cWhen the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible.\u201d<\/span><\/i><span data-contrast=\"auto\">&nbsp;\u2013 Christopher Reeve&nbsp;<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">For more information about connecting with others in the ECD Community:&nbsp;<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<br \/>\n<\/span><a href=\"https:\/\/www.erdheim-chester.org\/fr\/community-connections-during-covid-19\/\"><span data-contrast=\"none\">https:\/\/www.erdheim-chester.org\/community-connections-during-covid-19<\/span><span data-contrast=\"none\">\/<\/span><\/a><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>Facing a rare disease can seem like an uphill battle from time to time. The side effects of rare diseases, such as ECD are not only seen and felt from [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":17165,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[67],"tags":[83,56,98,99,100,82,52],"class_list":["post-17164","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","tag-blood-cancer","tag-erdheim-chester","tag-isolation","tag-lifestyle","tag-peer-support","tag-rare-cancer","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/17164","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"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=17164"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/17164\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/17165"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=17164"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=17164"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=17164"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}