{"id":59298,"date":"2021-10-05T13:06:59","date_gmt":"2021-10-05T17:06:59","guid":{"rendered":"https:\/\/rarediseases.org\/saidas-story-of-strength\/"},"modified":"2021-10-05T13:06:59","modified_gmt":"2021-10-05T17:06:59","slug":"saidas-story-of-strength","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/saidas-story-of-strength\/","title":{"rendered":"Saida\u2019s Story of Strength"},"content":{"rendered":"

I have been diagnosed with a rare chronic genetic disease called partial trisomy 8Q duplication syndrome since birth and I was also recently diagnosed with hidradenitis suppurativa (HS). My life has been full of challenges, and I want to bring awareness to what I go through so that anyone else struggling can find comfort and support in my story. <\/span>\u00a0<\/span><\/p>\n

My genetic disease affects my growth stature\u00a0and\u00a0causes\u00a0me to have\u00a0some\u00a0facial abnormalities.\u00a0It\u00a0is a complex\u00a0condition\u00a0that\u00a0also affects my brain functions\u00a0and\u00a0causes me to be handicapped\u00a0and\u00a0struggle\u00a0daily.\u00a0Additionally, at two years old, I had to have emergency surgery on my lung due to a ring defect as a result of my condition.<\/span>\u00a0<\/span><\/p>\n

I am thankful that my HS is on the mild\u00a0side\u00a0of the spectrum, and\u00a0as I get older,\u00a0I hope\u00a0that\u00a0it\u00a0does\u00a0not\u00a0worsen.\u00a0I will keep my head held high and be strong, as\u00a0I have\u00a0gone\u00a0through\u00a0challenges with\u00a0not only\u00a0my body, but with friends who do not support me through my struggle with rare disease.\u00a0There are no\u00a0current\u00a0cures for my medical conditions, although\u00a0I hope someday that will change.<\/span>\u00a0<\/span><\/p>\n

Having\u00a0rare chronic medical conditions, scoliosis, mental health disorders and other disabilities\u00a0have hugely impacted\u00a0me.\u00a0I have learned\u00a0to never give up and I am very inspired by\u00a0music.\u00a0Having my diagnosis has been an\u00a0overwhelming and difficult journey, and\u00a0I struggle\u00a0to find\u00a0helpful resources\u00a0and\u00a0a strong treatment plan.\u00a0I wanted to share my story and bring awareness to my diagnosis so that others who are going through the same thing do not have to feel alone.<\/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 been diagnosed with a rare chronic genetic disease called partial trisomy 8Q duplication syndrome since birth and I was also recently diagnosed with hidradenitis suppurativa (HS). My life … <\/p>\n

Continue reading “Saida\u2019s Story of Strength”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13170,"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":[2788,2790,2789,2767,2176,281,1345],"class_list":["post-59298","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patients-members","category-patient-stories","tag-genetic-disease","tag-hidradenitis-suppurativa","tag-partial-trisomy-8q-duplication-syndrome","tag-patient","tag-patient-story","tag-rare-disease-patients","tag-rare-genetic-disease"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59298","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=59298"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59298\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13170"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59298"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59298"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59298"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}