{"id":59291,"date":"2021-09-30T12:30:18","date_gmt":"2021-09-30T16:30:18","guid":{"rendered":"https:\/\/rarediseases.org\/timing-and-access-katherines-rare-cancer-story\/"},"modified":"2021-09-30T12:30:18","modified_gmt":"2021-09-30T16:30:18","slug":"timing-and-access-katherines-rare-cancer-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/timing-and-access-katherines-rare-cancer-story\/","title":{"rendered":"Timing and Access: Katherine\u2019s Rare Cancer Story"},"content":{"rendered":"

I was a healthy\u00a027-year-old\u00a0with no underlying risk factors when I was diagnosed with appendix cancer.<\/span>\u00a0<\/span><\/p>\n

One evening,\u00a0I started\u00a0cramping in my abdomen. I thought nothing of it until the intensity increased and I could barely sit upright or walk. I called my\u00a0primary\u00a0care\u00a0provider\u00a0and she recommended I go to the\u00a0emergency room, as it could be\u00a0appendicitis. I was nervous to go, as this was June 2020 and COVID cases were surging. My mom drove me in,\u00a0and sure enough, it was appendicitis. I spent the night\u00a0in the ER, got my appendix removed, and went home feeling much better.\u00a0<\/span>\u00a0<\/span><\/p>\n

A few weeks later,\u00a0I received a phone call from the surgeon who took out my appendix. I was driving and he asked me to pull over to the side of the road.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWhen we removed your appendix,\u00a0we found a tumor.\u00a0It\u2019s cancer, and we need to see you on Monday.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Having a rare disease made me feel alone; there\u00a0wasn’t\u00a0a large movement or group to feel connected to. Before my diagnosis,\u00a0I thought\u00a0that\u00a0most cancers were the same. Going through a cancer diagnosis and treatment\u00a0has\u00a0made me aware of\u00a0just\u00a0how different each patient’s experience is. With a rare cancer,\u00a0it was harder to find resources that exactly explained or aligned with what I was\u00a0going\u00a0through. I felt in the dark sometimes, and\u00a0I\u00a0still do today.\u00a0Now,\u00a0I’m\u00a0very aware of how\u00a0underfunded\u00a0and under researched rare diseases are.<\/span>\u00a0<\/span><\/p>\n

Many people with rare diseases struggle to get a diagnosis, and thus\u00a0cannot\u00a0properly begin treatment.\u00a0I am\u00a0lucky to have received my diagnosis quickly and to have started treatment quickly as well. Beyond the difficulty\u00a0of\u00a0receiving a proper diagnosis,\u00a0it is\u00a0equally as difficult to find the right specialists for treatment when they are so\u00a0few and far between. When your disease is rare, the time\u00a0it takes for a\u00a0diagnosis and\u00a0to\u00a0connect with the right specialist can often make successful treatment and recovery more difficult. Timing and access\u00a0are\u00a0so important when treating these diseases.<\/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":"

I was a healthy\u00a027-year-old\u00a0with no underlying risk factors when I was diagnosed with appendix cancer.\u00a0 One evening,\u00a0I started\u00a0cramping in my abdomen. I thought nothing of it until the intensity increased … <\/p>\n

Continue reading “Timing and Access: Katherine\u2019s Rare Cancer Story”<\/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":[2766,1616,203,2229,249,798,2045],"class_list":["post-59291","post","type-post","status-publish","format-standard","hentry","category-patients-members","category-patient-stories","category-voices-of-rare-cancer","tag-appendix","tag-appendix-cancer","tag-cancer","tag-covid-19","tag-diagnosis","tag-rare-cancer","tag-rare-cancer-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59291","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=59291"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59291\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59291"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59291"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59291"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}