{"id":59404,"date":"2022-04-29T13:00:36","date_gmt":"2022-04-29T17:00:36","guid":{"rendered":"https:\/\/rarediseases.org\/what-the-public-should-know-from-the-mother-of-an-undiagnosed-child\/"},"modified":"2022-04-29T13:00:36","modified_gmt":"2022-04-29T17:00:36","slug":"what-the-public-should-know-from-the-mother-of-an-undiagnosed-child","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/what-the-public-should-know-from-the-mother-of-an-undiagnosed-child\/","title":{"rendered":"What the Public Should Know: From the Mother of an Undiagnosed Child"},"content":{"rendered":"<p>I am a mom of a beautiful rare and unknown disease warrior. Sarah is 10 years old and has been facing a disease that is unknown for two years. We are trying IVIG treatments, and if they don&#8217;t work, we are being sent to the National Institutes of Health (NIH) for a case study. It&#8217;s been a very hard couple of years trying to explain how our child is sick and we don&#8217;t know what is wrong. I want her to be healthy and happy and to be a voice for others.  <\/p>\n<p>I want others to know that we don&#8217;t have answers. I want them to know that a text checking on your family is okay and to not be afraid to ask questions. However, please do not push your thoughts on what you think I need to do for my child. Help uplift and support, not judge.  <\/p>\n<p>The idea of health equity is important, because not everyone&#8217;s health will be the same. Times change, and so does our health. In time, maybe doctors have more insight to help kids who are rare like Sarah. <\/p>\n<p><em>Undiagnosed Day takes place on April 29. All diseases were once undiagnosed. Join NORD as we honor the undiagnosed rare disease community throughout the month of April.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>I am a mom of a beautiful rare and unknown disease warrior. Sarah is 10 years old and has been facing a disease that is unknown for two years. We &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/what-the-public-should-know-from-the-mother-of-an-undiagnosed-child\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;What the Public Should Know: From the Mother of an Undiagnosed Child&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[505],"tags":[413,267,2732],"class_list":["post-59404","post","type-post","status-publish","format-standard","hentry","category-patient-stories","tag-patient-stories","tag-undiagnosed","tag-undiagnosed-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59404","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59404"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59404\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59404"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59404"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59404"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}