{"id":59297,"date":"2021-12-03T14:00:58","date_gmt":"2021-12-03T19:00:58","guid":{"rendered":"https:\/\/rarediseases.org\/diannas-story-as-a-rare-survivor\/"},"modified":"2021-12-03T14:00:58","modified_gmt":"2021-12-03T19:00:58","slug":"diannas-story-as-a-rare-survivor","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/diannas-story-as-a-rare-survivor\/","title":{"rendered":"Dianna\u2019s Story as a Rare Survivor"},"content":{"rendered":"

Once,\u00a0I was an\u00a0intelligent, well-traveled\u00a0and\u00a0active\u00a0African American\u00a0entrepreneur\u00a0in my middle 40’s\u00a0who had\u00a0opportunities\u00a0to do wonderful things in the world.\u00a0My passion\u00a0was\u00a0to\u00a0help\u00a0disabled people of all ages improve their lives.\u00a0I\u00a0was\u00a0fortunate\u00a0enough\u00a0to be an\u00a0icon as the first\u00a0woman in\u00a0technology to\u00a0educate\u00a0thousands\u00a0of\u00a0individuals in\u00a0university\u00a0and\u00a0Fortune\u00a0corporations,\u00a0as well as\u00a0offering my\u00a0expertise\u00a0in\u00a0state,\u00a0federal\u00a0and\u00a0international\u00a0consulting.<\/span>\u00a0<\/span><\/p>\n

Further\u00a0aspirations ended when I was diagnosed with\u00a0stage IV\u00a0Leiomyosarcoma\u00a0(LMS)\u00a0pelvic bone\u00a0cancer\u00a0and given\u00a03-6 months to live.\u00a0I am just beginning to cope and on the road of recovery\u00a0with\u00a0plans to start a new life. I have a story to share\u00a0and\u00a0the\u00a0opportunity\u00a0to\u00a0volunteer\u00a0as a\u00a0rare\u00a0disease and\u00a0cancer\u00a0patient\u00a0advocate\u00a0has\u00a0given\u00a0me a purpose.\u00a0In addition to being a patient advocate, I use my platform to\u00a0share education and hope and\u00a0discuss\u00a0what it is like to survive a rare disease\u00a0by\u00a0hosting\u00a0my\u00a0show,\u00a0“A Talk with Dianna\u00a0\u2018Survivor.\u2019”.<\/span>\u00a0<\/span><\/p>\n

Being diagnosed with Leiomyosarcoma\u00a0in 2004 was a death sentence.\u00a0In\u00a0addition,\u00a0the survivor rate\u00a0of this cancer\u00a0was low,\u00a0especially\u00a0in\u00a0stage IV.\u00a0It was a challenge\u00a0to\u00a0be unable\u00a0to walk for years and\u00a0rely\u00a0heavily\u00a0on pain medications.\u00a0I\u00a0still suffer many side effects and\u00a0another rare diagnosis,\u00a0which is not\u00a0yet\u00a0understood by my team of\u00a0medical\u00a0professionals. It\u00a0is\u00a0difficult having\u00a0\u201cchemo\u00a0brain,\u201d\u00a0especially\u00a0when\u00a0I look back at my\u00a0achievements\u00a0before\u00a0LMS.<\/span>\u00a0<\/span><\/p>\n

The future is bleak as to all other rare disorders. If they lack funding for research and development, many people will die or suffer with several types of disabilities, which the health system is not yet equipped to deal with. It matters to tell your story because no one, including other rare disease patients, would know otherwise.\u00a0<\/span><\/p>\n

The National Organization for Rare Disorders (NORD) is committed to telling the stories of patients and families with rare or undiagnosed diseases and helping them live their best rare lives. If you would like to share your story, contact NORD\u00a0<\/span><\/i>here<\/span><\/i><\/a>.<\/span><\/i>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Once,\u00a0I was an\u00a0intelligent, well-traveled\u00a0and\u00a0active\u00a0African American\u00a0entrepreneur\u00a0in my middle 40’s\u00a0who had\u00a0opportunities\u00a0to do wonderful things in the world.\u00a0My passion\u00a0was\u00a0to\u00a0help\u00a0disabled people of all ages improve their lives.\u00a0I\u00a0was\u00a0fortunate\u00a0enough\u00a0to be an\u00a0icon as the first\u00a0woman in\u00a0technology to\u00a0educate\u00a0thousands\u00a0of\u00a0individuals … <\/p>\n

Continue reading “Dianna\u2019s Story as a Rare Survivor”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13168,"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],"tags":[2785,203,2786,2787,204,2762,2763,2767,798,315,2782],"class_list":["post-59297","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patients-members","category-patient-stories","tag-bone-cancer","tag-cancer","tag-chemo","tag-chemo-brain","tag-chemotherapy","tag-leiomyosarcoma","tag-lms","tag-patient","tag-rare-cancer","tag-rare-disease","tag-rare-disease-patient"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59297","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=59297"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59297\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13168"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59297"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59297"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59297"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}