{"id":59294,"date":"2021-10-29T13:00:55","date_gmt":"2021-10-29T17:00:55","guid":{"rendered":"https:\/\/rarediseases.org\/five-disorders-dees-rare-story\/"},"modified":"2021-10-29T13:00:55","modified_gmt":"2021-10-29T17:00:55","slug":"five-disorders-dees-rare-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/five-disorders-dees-rare-story\/","title":{"rendered":"Five Disorders: Dee\u2019s Rare Story"},"content":{"rendered":"

I have five rare\u00a0disorders:\u00a0Chiari\u00a0malformation,\u00a0intracranial\u00a0hypertension,\u00a0chronic Epstein-Barr\u00a0virus\u00a0(EBV),\u00a0fibromyalgia,\u00a0Hashimoto\u00a0syndrome, along with\u00a0a plethora of other illnesses.\u00a0An infectious disease doctor\u00a0once\u00a0told me that I was a poster child for the medical field.\u00a0However, my journey with rare disease began far before I was diagnosed\u00a0in\u00a02009.<\/span>\u00a0<\/span><\/p>\n

Living with\u00a0a\u00a0rare disease makes you grateful for everything that most\u00a0people\u00a0take for\u00a0granted.\u00a0Four\u00a0brain surgeries later,\u00a0I go on.\u00a0The\u00a0chronic EBV destroys my immune system, so I\u00a0must\u00a0be\u00a0very careful\u00a0about\u00a0avoiding illness,\u00a0which has been especially difficult due to the pandemic.\u00a0<\/span><\/p>\n

I would love to be able to clean my home, mow my yard, work in my gardens or just play with the little ones at family gatherings.\u00a0My mowing days are long past, and\u00a0although I do still go out\u00a0and work in my flower gardens, I always\u00a0need\u00a0help.<\/span>\u00a0<\/span><\/p>\n

I am lucky that my family\u00a0and friends\u00a0support me\u00a0as I live with rare disease.\u00a0I\u00a0plan ahead, but I never know\u00a0how\u00a0I will feel.\u00a0I’ve\u00a0filed for disability so many times that I have the\u00a0paperwork\u00a0memorized, yet they say that I did not get a\u00a0diagnosis\u00a0soon enough to qualify.<\/span>\u00a0<\/span><\/p>\n

The future of my disorders sometimes seems promising, but the side effects of the medication\u00a0can be\u00a0worse than the disease. There is no cure for any of\u00a0them, so\u00a0I\u2019ve\u00a0had to\u00a0learn to adjust.\u00a0If you are new to rare disorders my advice is this:\u00a0learn everything you can about your disease and be proactive in your care.\u00a0I share my story because I have lived many years with rare\u00a0diseases,\u00a0and\u00a0I’ve\u00a0learned\u00a0a lot.\u00a0If in anyway it can help someone else, then it has served.<\/span>\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":"

I have five rare\u00a0disorders:\u00a0Chiari\u00a0malformation,\u00a0intracranial\u00a0hypertension,\u00a0chronic Epstein-Barr\u00a0virus\u00a0(EBV),\u00a0fibromyalgia,\u00a0Hashimoto\u00a0syndrome, along with\u00a0a plethora of other illnesses.\u00a0An infectious disease doctor\u00a0once\u00a0told me that I was a poster child for the medical field.\u00a0However, my journey with rare disease … <\/p>\n

Continue reading “Five Disorders: Dee\u2019s Rare Story”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13162,"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":[1314,2774,2777,2776,2698,2775,2773,2767,2176,315,228],"class_list":["post-59294","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patients-members","category-patient-stories","tag-chiari-malformation","tag-chronic-epstein-barr-virus-ebv","tag-ebv","tag-family","tag-fibromyalgia","tag-hashimoto-syndrome","tag-intracranial-hypertension","tag-patient","tag-patient-story","tag-rare-disease","tag-rare-diseases"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59294","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=59294"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59294\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13162"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59294"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59294"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59294"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}