{"id":91030,"date":"2022-09-15T20:15:44","date_gmt":"2022-09-16T00:15:44","guid":{"rendered":"https:\/\/rarediseases.org\/introducing-august-augusts-behcets-journey\/"},"modified":"2022-09-15T20:15:44","modified_gmt":"2022-09-16T00:15:44","slug":"introducing-august-augusts-behcets-journey","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/introducing-august-augusts-behcets-journey\/","title":{"rendered":"Introducing August: August’s Beh\u00e7et\u2019s Journey"},"content":{"rendered":"

Introducing August<\/a><\/p>\n

My name is August Rocha, and I am an adopted, Chinese-American, transgender TikTok content creator living with Beh\u00e7et\u2019s disease. While I\u2019ve been symptomatic all my life, I wasn\u2019t diagnosed with Beh\u00e7et\u2019s until age 21, in the summer of 2016.<\/span>\u00a0<\/span><\/p>\n

Beh\u00e7et\u2019s disease is a rare form of vasculitis that causes inflammation in the blood vessels. I\u2019ll be honest, living with Beh\u00e7et\u2019s is not all rainbows and sunshine. The diagnosis process for folks with Beh\u00e7et\u2019s often takes upwards of five to ten years. After a childhood full of unanswered questions and chronic pain, I was plagued by genital and oral sores. Seeking answers, I found a specialist in the Rheumatology Department at Mount Sinai as I was living in New York City. She took one look at me and diagnosed my situation perfectly. The hope that my diagnosis gave me was unimaginable. <\/span><\/p>\n

As for what living with Beh\u00e7et\u2019s Disease is like, my answer is as up in the air as my symptoms. Sometimes I have really easy days where I can live an average life. I can go out with friends, run errands, and go to sleep happily. Other days, I wake up in severe pain, and can\u2019t move or sleep. I use a walker, and sometimes a wheelchair, but even so, I am constantly keeping up with my Beh\u00e7et\u2019s and its unpredictability. It is the bane of my existence, but also one of my greatest gifts.<\/span>\u00a0<\/span><\/p>\n

The future of Beh\u00e7et\u2019s is unknown. Some say we\u2019ll never find a cure. I say there\u2019s always hope. With organizations like the National Organization for Rare Disorders (NORD), I am optimistic about the future of Beh\u00e7et\u2019s.<\/span>\u00a0<\/span><\/p>\n

I share this story to let people know they are not alone. I don\u2019t know what impact I will have, but the very idea that one person out there could read this and feel less isolated in this world is enough.<\/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 <\/i>here<\/i><\/a>.<\/i><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Introducing August My name is August Rocha, and I am an adopted, Chinese-American, transgender TikTok content creator living with Beh\u00e7et\u2019s disease. While I\u2019ve been symptomatic all my life, I wasn\u2019t … <\/p>\n

Continue reading “Introducing August: August’s Beh\u00e7et\u2019s Journey”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":91031,"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":[505],"tags":[2665,228,2896],"class_list":["post-91030","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","tag-behcets-disease","tag-rare-diseases","tag-share-your-story"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/91030","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=91030"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/91030\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/91031"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=91030"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=91030"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=91030"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}