{"id":59251,"date":"2021-02-23T00:13:51","date_gmt":"2021-02-23T05:13:51","guid":{"rendered":"https:\/\/rarediseases.org\/ramonas-story-in-honor-of-rare-disease-day\/"},"modified":"2021-02-23T00:13:51","modified_gmt":"2021-02-23T05:13:51","slug":"ramonas-story-in-honor-of-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/ramonas-story-in-honor-of-rare-disease-day\/","title":{"rendered":"Ramona\u2019s Story in Honor of Rare Disease Day"},"content":{"rendered":"

I am a patient diagnosed with\u00a0<\/span>autoimmune<\/span>\u00a0neutropenia<\/span>\u00a0and AA\u00a0<\/span>amyloidosis<\/span>\u00a0(renal) which affects my kidneys.<\/span>\u00a0<\/span>My symptoms includ<\/span>e<\/span>\u00a0fatigue, short<\/span>ness<\/span>\u00a0of breath, low white\u00a0<\/span>blood\u00a0<\/span>cells, anemia and stres<\/span>s.<\/span>\u00a0I have also been suspected of Behcet<\/span>\u2019s<\/span>\u00a0<\/span>disease,<\/span>\u00a0<\/span>but\u00a0<\/span>doctors<\/span>\u00a0<\/span>have not confirmed this diagnosis<\/span>.<\/span>\u00a0<\/span>I also often\u00a0<\/span>have\u00a0<\/span>mouth\u00a0<\/span>sores and occasional\u00a0<\/span>genital\u00a0<\/span>sores.<\/span>\u00a0<\/span><\/p>\n

Rare Disease Day i<\/span>s\u00a0<\/span>important to raise\u00a0<\/span>the\u00a0<\/span>world’s awareness about rare conditions which are<\/span>\u00a0<\/span>really<\/span>\u00a0not<\/span>\u00a0<\/span>rare<\/span>.<\/span>\u00a0<\/span>I<\/span>\u00a0would<\/span>\u00a0<\/span>like the public to know<\/span>\u00a0<\/span>that patients with<\/span>\u00a0long<\/span>–<\/span>term<\/span>, chronic<\/span>\u00a0disease<\/span>s<\/span>\u00a0<\/span>undergo many blood tests to\u00a0<\/span>put a name to our\u00a0<\/span>disease<\/span>s<\/span>.<\/span>\u00a0<\/span>W<\/span>e suffer because there\u00a0<\/span>are\u00a0<\/span>no\u00a0<\/span>cure<\/span>s<\/span>,\u00a0<\/span>only\u00a0<\/span>treatments\u00a0<\/span>that keep\u00a0<\/span>the symptoms\u00a0<\/span>under control<\/span>.<\/span>\u00a0<\/span>T<\/span>he challenge<\/span>s<\/span>\u00a0we<\/span>\u00a0face are of continuous struggle to tolerate fatigue and pain.\u00a0<\/span>\u00a0<\/span><\/p>\n

I will be\u00a0<\/span>showing my stripes\u00a0<\/span>for Rare Disease Day\u00a0<\/span>by\u00a0<\/span>talking<\/span>\u00a0<\/span>about it with others\u00a0<\/span>and sharing\u00a0<\/span>information\u00a0<\/span>on social media<\/span>\u00a0for others to see<\/span>.<\/span>\u00a0<\/span><\/p>\n

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

I am a patient diagnosed with\u00a0autoimmune\u00a0neutropenia\u00a0and AA\u00a0amyloidosis\u00a0(renal) which affects my kidneys.\u00a0My symptoms include\u00a0fatigue, shortness\u00a0of breath, low white\u00a0blood\u00a0cells, anemia and stress.\u00a0I have also been suspected of Behcet\u2019s\u00a0disease,\u00a0but\u00a0doctors\u00a0have not confirmed this diagnosis.\u00a0I … <\/p>\n

Continue reading “Ramona\u2019s Story in Honor of Rare Disease Day”<\/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":[192,505,1827],"tags":[2666,2664,2665,219],"class_list":["post-59251","post","type-post","status-publish","format-standard","hentry","category-patients-members","category-patient-stories","category-rare-disease-day","tag-aa-amyloidosis","tag-autoimmune-neutropenia","tag-behcets-disease","tag-rare-disease-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59251","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=59251"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59251\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59251"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59251"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59251"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}