{"id":59243,"date":"2021-02-12T20:29:54","date_gmt":"2021-02-13T01:29:54","guid":{"rendered":"https:\/\/rarediseases.org\/amys-story-in-honor-of-rare-disease-day\/"},"modified":"2021-02-12T20:29:54","modified_gmt":"2021-02-13T01:29:54","slug":"amys-story-in-honor-of-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/amys-story-in-honor-of-rare-disease-day\/","title":{"rendered":"Amy’s Story in Honor of Rare Disease Day"},"content":{"rendered":"

I am a patient\u00a0<\/span>who has lived with<\/span>\u00a0<\/span>s<\/span>ystemic\u00a0<\/span>s<\/span>cleroderma for over nineteen years<\/span>, having been\u00a0<\/span>diagnosed as a teenager.<\/span>\u00a0<\/span><\/p>\n

Rare\u00a0<\/span>D<\/span>isease\u00a0<\/span>D<\/span>ay<\/span>\u00a0is a day when I get to feel like I am making a difference by telling my story and educating the world about how this disease has changed my entire life. For the bad and the good. This day<\/span>\u00a0also<\/span>\u00a0allows me to educate not only regular p<\/span>eople,\u00a0<\/span>but clinicians,\u00a0<\/span>researchers<\/span>\u00a0and other patients. To let them know exactly what scleroderma is and how important it is to develop treatments and hopefully a cure.<\/span>\u00a0<\/span><\/p>\n

We may be challenged by our\u00a0<\/span>disease,<\/span>\u00a0but we are not defined by it<\/span>.\u00a0<\/span>Health equity to<\/span>\u00a0me<\/span>\u00a0means the willingness and opportunity for patients to be treated the same<\/span>,<\/span>\u00a0no matter what disease\u00a0<\/span>they\u00a0<\/span>have.\u00a0<\/span>It means equity in terms of s<\/span>ocially, politically, medically,\u00a0<\/span>financially<\/span>, and lastly in te<\/span>rms of g<\/span>rant<\/span>\u00a0<\/span>selection<\/span>,\u00a0<\/span>research<\/span>\u00a0and treatment\u00a0<\/span>development.<\/span>\u00a0<\/span><\/p>\n

I show my stripes\u00a0<\/span>every day<\/span>\u00a0be<\/span>cause\u00a0<\/span>it is<\/span>\u00a0my life and I want p<\/span>eople\u00a0<\/span>to know\u00a0<\/span>that it<\/span>\u00a0i<\/span>s<\/span>\u00a0difficult<\/span>\u00a0<\/span>and different<\/span>,<\/span>\u00a0but\u00a0<\/span>also<\/span>\u00a0beautiful and ama<\/span>zing<\/span>. On\u00a0<\/span>Rare D<\/span>isease\u00a0<\/span>D<\/span>ay I will\u00a0<\/span>continue to\u00a0<\/span>show my stripes by posting my journey on my social media accounts and by being proud of who I am inside and out<\/span>. I will show my stripes by living my life to the fullest with courage, honor<\/span>\u00a0and integrity.<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

I am a patient\u00a0who has lived with\u00a0systemic\u00a0scleroderma for over nineteen years, having been\u00a0diagnosed as a teenager.\u00a0 Rare\u00a0Disease\u00a0Day\u00a0is a day when I get to feel like I am making a difference … <\/p>\n

Continue reading “Amy’s Story in Honor of Rare Disease Day”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13084,"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":[505,1827],"tags":[2645,219,2644],"class_list":["post-59243","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","category-rare-disease-day","tag-health-equity","tag-rare-disease-day","tag-systemic-scleroderma"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59243","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=59243"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59243\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13084"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59243"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59243"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59243"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}