{"id":457,"date":"2021-06-07T12:44:06","date_gmt":"2021-06-07T10:44:06","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/events\/world-amyloidosis-day\/testimonials\/a-minha-historia\/"},"modified":"2021-06-07T12:44:06","modified_gmt":"2021-06-07T10:44:06","slug":"a-minha-historia","status":"publish","type":"aa_testimony","link":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/a-minha-historia\/","title":{"rendered":"A Minha Historia"},"content":{"rendered":"<p class=\"wp-block-paragraph\">A Minha Historia n\u00e3o \u00e9 muito diferente de todas as outras que, s\u00e3o diagnosticados com esta doen\u00e7a, surge num momento em que estas a come\u00e7ar a construir a tua Vida, e de repente, o teu mundo cai. Os primeiros sintomas foram e enfartamento, perda de peso, e mau estar de forma geral, ocorreu numa p\u00e9ssima altura, na qual estava para ser aprovado o Tafamidis, o mesmo aguardei quase um ano para iniciar o tratamento, uma vez que recusei o transplante Hep\u00e1tico, nunca vou descobrir se foi a op\u00e7\u00e3o mais certa a tomar ou n\u00e3o, entretanto passados 5 anos o tafamidis deixa de fazer o efeito desejado, come\u00e7o a perder a mobilidade, e surge ent\u00e3o o ONPATTRO (PATISIRAN), tratamento que estou a efetuar de 3 em 3 semanas no Hospital de St\u00ba Ant\u00f3nio faz j\u00e1 12 meses, a doen\u00e7a pare ter estabilizado, apesar de viver com as mazelas que ao longo de 12 anos se foram acumulando.<\/p>\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>Hoje sei que existe uma esperan\u00e7a para se viver com dignidade com esta doen\u00e7a<\/p>\n<\/blockquote>\n<p class=\"wp-block-paragraph\">Hoje sei que existe uma esperan\u00e7a para se viver com dignidade com esta doen\u00e7a, que num futuro pr\u00f3ximo poder\u00e1 vir a ser erradicada, com os avan\u00e7os da medicina, escolhendo o gene certo para poder passar descend\u00eancia. Estarei sempre revoltado com o meu destino, isto porque nunca me foi perguntado se pretendia ser vitima de um sacrif\u00edcio, que em nada estava disposto a aceitar. No entanto luto para que cada dia seja melhor que o anterior, e o pr\u00f3ximo melhor que o de ontem. For\u00e7a a todos os que sofrem com esta doen\u00e7a heredit\u00e1ria, que nada fizemos para merecer a mesma.<\/p>\n<p class=\"wp-block-paragraph\"><a href=\"Amyloidosis: Our family's curse\">A Minha Historia<\/a> &#8211; Rui R. &#8211; Portugal<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A Minha Historia n\u00e3o \u00e9 muito diferente de todas as outras que, s\u00e3o diagnosticados com esta doen\u00e7a, surge num momento em que estas a come\u00e7ar a construir a tua Vida, e de repente, o teu mundo cai.<\/p>\n","protected":false},"featured_media":458,"template":"","class_list":["post-457","aa_testimony","type-aa_testimony","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>A Minha Historia - Amyloidosis Alliance<\/title>\n<meta name=\"description\" content=\"A Minha Historia n\u00e3o \u00e9 muito diferente de todas as outras que, s\u00e3o diagnosticados com esta doen\u00e7a, surge num momento em que estas a come\u00e7ar a construir a tua Vida, e de repente, o teu mundo cai.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/a-minha-historia\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"A Minha Historia - 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