{"id":59288,"date":"2021-09-10T13:00:06","date_gmt":"2021-09-10T17:00:06","guid":{"rendered":"https:\/\/rarediseases.org\/sharing-makaylas-voice-for-rare-cancer-day\/"},"modified":"2021-09-10T13:00:06","modified_gmt":"2021-09-10T17:00:06","slug":"sharing-makaylas-voice-for-rare-cancer-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/sharing-makaylas-voice-for-rare-cancer-day\/","title":{"rendered":"Sharing Makayla\u2019s Voice for Rare Cancer Day"},"content":{"rendered":"

At the age of 14, I was diagnosed with a rare form of GI tract cancer called\u00a0gastrointestinal\u00a0stromal\u00a0tumors (GIST).<\/span>\u00a0<\/span><\/p>\n

Living with\u00a0a\u00a0rare disease is incredibly complicated,\u00a0and you\u00a0must\u00a0learn how to be your own best advocate. Someone\u00a0else\u00a0may have the same disease, but everyone\u2019s experience is going to be drastically different.<\/span>\u00a0<\/span><\/p>\n

Initially,\u00a0there was not a lot of knowledge of GIST. Although we\u00a0are still years away from accumulating the information we need, we\u00a0have\u00a0learned\u00a0that\u00a0people with\u00a0the\u00a0same mutation\u00a0as me,\u00a0epigenetic\u00a0SDH-C,\u00a0often live a\u00a0fairly normal\u00a0life.\u00a0However,\u00a0it is common for people to\u00a0struggle due to complications of the tumors themselves.\u00a0In my case, all I can remember is having stomach pain, and I don’t know what it’s like to live without it.<\/span>\u00a0<\/span><\/p>\n

My\u00a0story,\u00a0like anyone\u00a0else\u2019s,\u00a0is rare and unique and deserves to be heard. My 10+ years of dealing with this cancer has given me the opportunity to learn so much and be an advocate for others\u00a0struggling with GIST and other rare diseases. My voice may be\u00a0quiet\u00a0as\u00a0an\u00a0individual\u00a0but\u00a0if you\u00a0bring\u00a0together\u00a0the thousands\u00a0of people who have\u00a0been diagnosed with\u00a0rare diseases, our voices are like lions.<\/span>\u00a0<\/span><\/p>\n

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more<\/a>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

At the age of 14, I was diagnosed with a rare form of GI tract cancer called\u00a0gastrointestinal\u00a0stromal\u00a0tumors (GIST).\u00a0 Living with\u00a0a\u00a0rare disease is incredibly complicated,\u00a0and you\u00a0must\u00a0learn how to be your own … <\/p>\n

Continue reading “Sharing Makayla\u2019s Voice for Rare Cancer 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":[192,505,2754],"tags":[203,2760,2759,798,2045],"class_list":["post-59288","post","type-post","status-publish","format-standard","hentry","category-patients-members","category-patient-stories","category-voices-of-rare-cancer","tag-cancer","tag-gastrointestinal-stromal-tumors","tag-gist","tag-rare-cancer","tag-rare-cancer-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59288","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=59288"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59288\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59288"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59288"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59288"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}