{"id":59296,"date":"2021-12-27T13:30:57","date_gmt":"2021-12-27T18:30:57","guid":{"rendered":"https:\/\/rarediseases.org\/far-from-normal-brendas-rare-disease-story\/"},"modified":"2021-12-27T13:30:57","modified_gmt":"2021-12-27T18:30:57","slug":"far-from-normal-brendas-rare-disease-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/far-from-normal-brendas-rare-disease-story\/","title":{"rendered":"Far From \u201cNormal\u201d: Brenda\u2019s Rare Disease Story"},"content":{"rendered":"

I\u2019m\u00a0as \u201cnormal\u201d as anyone else.\u00a0I look completely \u201cnormal\u201d (besides being in\u00a0an\u00a0orthopedic brace), I act completely \u201cnormal,\u201d\u00a0and my life is completely \u201cnormal\u201d.\u00a0I have been married for\u00a040\u00a0years\u00a0and have\u00a0two\u00a0adult children and\u00a0three\u00a0grandchildren. I\u00a0have\u00a0worked\u00a0with\u00a0my husband\u00a0in his private\u00a0optometry\u00a0practice for\u00a020\u00a0years and help with\u00a0the\u00a0daily care of our\u00a011-year-old\u00a0grandson. My life is full, happy,\u00a0active\u00a0and busy\u00a0\u2013\u00a0as \u201cnormal\u201d as I may assume some of yours are.<\/span>\u00a0<\/span><\/p>\n

However,\u00a0I am far from \u201cnormal\u201d.\u00a0I have a rare disease that spontaneously and randomly tears my tendons and cartilage. So rare that few\u00a0doctors\u00a0have even heard of it,\u00a0even fewer have ever seen or treated it and no one\u00a0else\u00a0has it.\u00a0This was, as you can imagine,\u00a0impossible to believe.\u00a018\u00a0years later\u00a0I still have\u00a0a hard time\u00a0wrapping my head around it.\u00a0It took\u00a0six\u00a0years,\u00a0five doctors,\u00a0three\u00a0top ranked rare disease specialists across the\u00a0United States\u00a0and\u00a014\u00a0orthopedic surgeries before I was correctly diagnosed with what is now called \u201can orphan of a rare HLA B27 autoimmune disease\u201d.\u00a0<\/span>\u00a0<\/span><\/p>\n

With no doctors having any experience with this disease and no\u00a0FDA\u00a0approved treatments, it was predicted that the damage to my tendons and joints would be so severe\u00a0that\u00a0I would be in a wheelchair in my\u00a050s.\u00a0After the shock and disbelief wore off, when it was clear this\u00a0wasn\u2019t\u00a0some horrible nightmare, I got busy.\u00a0At first, it was hard getting doctors to believe that I\u00a0have\u00a0some\u00a0rare\u00a0disease\u00a0they\u2019ve\u00a0never heard of, but I found a team of doctors willing to\u00a0think outside the box. I began a\u00a0lifelong\u00a0treatment of a chemotherapy drug, a biologic drug and other disease\u00a0modifying\u00a0drugs to try to slow the progression and lessen the severity of this disease. And\u00a0six\u00a0years\u00a0ago,\u00a0I began stem cell procedures to try to help repair my torn tendons.\u00a0My\u00a0medications and treatments are\u00a0considered experimental\u00a0\u2013 they\u00a0are not FDA approved\u00a0and not covered by insurance. I cannot tell you how many times\u00a0I\u2019ve\u00a0heard from my doctors,\u00a0\u201cI\u2019ve never seen this before, I\u2019ve never tried this before, I have no idea if this well even help you.\u201d I shrug my shoulders,\u00a0smile\u00a0and\u00a0say,\u00a0\u201cMe\u00a0neither, but I have no other options, and if you are willing to jump on this crazy train with me, I\u2019m willing to do everything and anything I can do to get better!\u201d<\/span>\u00a0<\/span><\/p>\n

My disease is\u00a0incurable,\u00a0and it will continue to damage my tendons, soft\u00a0tissue\u00a0and cartilage.\u00a0I live on chemotherapy drugs that make me sick and inject myself with a biologic drug.\u00a0I will continue to\u00a0be medically\u00a0monitored\u00a0for the rest of my life and\u00a0I will continue to live in my\u00a0doctor’s\u00a0office and in physical therapy.\u00a0I am determined to live the best life I can, despite living in a body that tears me apart.<\/span>\u00a0<\/span><\/p>\n

I\u2019m\u00a0just a \u201cnormal\u201d person that suddenly found myself in a rare world I knew nothing about. A scary, lonely, painful, frustrating unbelievable world,\u00a0and there\u00a0isn\u2019t\u00a0a thing I can do to prevent\u00a0or\u00a0change it. I have no control over my disease, but I do have control\u00a0over\u00a0how I choose to live with it.\u00a0I could have easily accepted the grim prognosis,\u00a0thrown up my arms in defeat and laid on my couch feeling sorry for myself waiting for the wheelchair to come, but that would be worse than the disease itself!<\/span>\u00a0<\/span><\/p>\n

I hope\u00a0that\u00a0my story can help someone else find their strength, their courage, their defiance to stand up and demand of themselves and their medical team better.\u00a0Never give up, never settle, never surrender to the disease, never allow it to take you out of your life!<\/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\u2019m\u00a0as \u201cnormal\u201d as anyone else.\u00a0I look completely \u201cnormal\u201d (besides being in\u00a0an\u00a0orthopedic brace), I act completely \u201cnormal,\u201d\u00a0and my life is completely \u201cnormal\u201d.\u00a0I have been married for\u00a040\u00a0years\u00a0and have\u00a0two\u00a0adult children and\u00a0three\u00a0grandchildren. I\u00a0have\u00a0worked\u00a0with\u00a0my husband\u00a0in … <\/p>\n

Continue reading “Far From \u201cNormal\u201d: Brenda\u2019s Rare Disease Story”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13166,"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":[2784,244,2783,2767,2176,2421,315,2782,414],"class_list":["post-59296","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patients-members","category-patient-stories","tag-autoimmune-disease","tag-fda","tag-hla-b27-autoimmune-disease","tag-patient","tag-patient-story","tag-rare-autoimmune-diseases","tag-rare-disease","tag-rare-disease-patient","tag-treatment"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59296","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=59296"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59296\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13166"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59296"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59296"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59296"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}