{"id":305814,"date":"2026-08-23T15:44:34","date_gmt":"2026-08-23T18:44:34","guid":{"rendered":"https:\/\/portalpopmais.com.br\/?p=305814"},"modified":"2026-08-23T15:46:45","modified_gmt":"2026-08-23T18:46:45","slug":"em-primeira-aparicao-apos-diagnostico-lito-sousa-faz-apelo-por-a-tratamento-experimental-contra-doenca-rara-cada-minuto-importa","status":"publish","type":"post","link":"https:\/\/portalpopmais.com.br\/en\/em-primeira-aparicao-apos-diagnostico-lito-sousa-faz-apelo-por-a-tratamento-experimental-contra-doenca-rara-cada-minuto-importa\/","title":{"rendered":"Em primeira apari\u00e7\u00e3o ap\u00f3s diagn\u00f3stico, Lito Sousa faz apelo por a tratamento experimental contra doen\u00e7a rara: &#8220;Cada minuto importa&#8221;"},"content":{"rendered":"<p class=\"wp-block-paragraph\">O influenciador digital e ex-mec\u00e2nico de avia\u00e7\u00e3o Lito Sousa fez, neste domingo (23), sua primeira apari\u00e7\u00e3o p\u00fablica desde que teve o diagn\u00f3stico de doen\u00e7a de Creutzfeldt-Jakob (DCJ) divulgado pela fam\u00edlia. Em um v\u00eddeo publicado nas redes sociais, ele faz um apelo urgente para ter acesso a um tratamento experimental que est\u00e1 sendo desenvolvido por pesquisadores da Universidade Harvard, nos Estados Unidos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Falando em ingl\u00eas, Lito direciona sua mensagem \u00e0 farmac\u00eautica Ionis Pharmaceuticals, ao Broad Institute, \u00e0 Universidade Harvard e \u00e0 Mayo Clinic. &#8220;Ol\u00e1, meu nome \u00e9 Lito Sousa e tenho um apelo urgente para voc\u00ea. Por favor, ou\u00e7a atentamente esta mensagem&#8221;, diz o influenciador no in\u00edcio do v\u00eddeo.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Na sequ\u00eancia, o contador de hist\u00f3rias e especialista em comunica\u00e7\u00e3o internacional Ewandro Magalh\u00e3es refor\u00e7a o pedido. Segundo ele, Lito enfrenta uma doen\u00e7a neurol\u00f3gica rara, de r\u00e1pida evolu\u00e7\u00e3o e, na maioria dos casos, fatal, para a qual ainda n\u00e3o existe um tratamento padr\u00e3o.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">O comunicado destaca que a fam\u00edlia busca incluir o influenciador em um ensaio cl\u00ednico experimental. &#8220;Sua fam\u00edlia est\u00e1 correndo para inclu\u00ed-lo em um estudo experimental. Dar a Lito essa oportunidade significa oferecer uma chance de lutar, al\u00e9m de ampliar a visibilidade das pesquisas sobre a doen\u00e7a. Cada minuto importa&#8221;, afirma Magalh\u00e3es.<\/p>\n\n\n\n<blockquote class=\"instagram-media\" data-instgrm-captioned data-instgrm-permalink=\"https:\/\/www.instagram.com\/reel\/DcZBm3EjMrT\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"14\" style=\" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:540px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\"><div style=\"padding:16px;\"> <a href=\"https:\/\/www.instagram.com\/reel\/DcZBm3EjMrT\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;\" target=\"_blank\" rel=\"noopener\"> <div style=\" display: flex; flex-direction: row; align-items: center;\"> <div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div> <div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\"> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div><\/div><\/div><div style=\"padding: 19% 0;\"><\/div> <div style=\"display:block; height:50px; margin:0 auto 12px; width:50px;\"><svg width=\"50px\" height=\"50px\" viewbox=\"0 0 60 60\" version=\"1.1\" xmlns=\"https:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"https:\/\/www.w3.org\/1999\/xlink\"><g stroke=\"none\" stroke-width=\"1\" fill=\"none\" fill-rule=\"evenodd\"><g transform=\"translate(-511.000000, -20.000000)\" fill=\"#000000\"><g><path d=\"M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631\"><\/path><\/g><\/g><\/g><\/svg><\/div><div style=\"padding-top: 8px;\"> <div style=\" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\">Ver essa foto no Instagram<\/div><\/div><div style=\"padding: 12.5% 0;\"><\/div> <div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\"><div> <div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div> <div style=\"background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div> <div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div><\/div><div style=\"margin-left: 8px;\"> <div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div> <div style=\" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)\"><\/div><\/div><div style=\"margin-left: auto;\"> <div style=\" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div> <div style=\" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div> <div style=\" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div><\/div><\/div> <div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;\"> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;\"><\/div> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;\"><\/div><\/div><\/a><p style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;\"><a href=\"https:\/\/www.instagram.com\/reel\/DcZBm3EjMrT\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none;\" target=\"_blank\" rel=\"noopener\">Um post compartilhado por Lito Sousa (@lito)<\/a><\/p><\/div><\/blockquote>\n<script async src=\"\/\/www.instagram.com\/embed.js\"><\/script>\n\n\n\n<h2 class=\"wp-block-heading\">Doen\u00e7a evolui rapidamente<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">A doen\u00e7a de Creutzfeldt-Jakob \u00e9 uma condi\u00e7\u00e3o neurol\u00f3gica rara e degenerativa que provoca r\u00e1pida deteriora\u00e7\u00e3o das fun\u00e7\u00f5es cerebrais. Segundo Mila Seidl, esposa de Lito, a evolu\u00e7\u00e3o do quadro tem sido acelerada. Ela revelou que o influenciador perdeu parte da vis\u00e3o de um dia para o outro, evidenciando a agressividade da doen\u00e7a.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Mobiliza\u00e7\u00e3o nas redes sociais<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Antes mesmo da divulga\u00e7\u00e3o do v\u00eddeo, seguidores de Lito iniciaram uma campanha nas redes sociais para pressionar institui\u00e7\u00f5es de pesquisa e ampliar as chances de sua participa\u00e7\u00e3o em estudos cl\u00ednicos com o medicamento experimental ION717, desenvolvido pela Ionis Pharmaceuticals.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">De acordo com a fam\u00edlia, dois estudos s\u00e3o considerados promissores. Um deles \u00e9 conduzido pela Universidade Harvard, enquanto o outro re\u00fane centros de pesquisa na Fran\u00e7a, Alemanha e Inglaterra. No entanto, ambos n\u00e3o estariam aceitando novos participantes neste momento.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Mila afirma que j\u00e1 entrou em contato com os respons\u00e1veis pelos dois projetos e tenta viabilizar uma exce\u00e7\u00e3o aos crit\u00e9rios de inclus\u00e3o. &#8220;Eu tenho 0% de chance, mas se eu tiver 1% de chance em qualquer lugar, a gente quer esse 1%&#8221;, declarou.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">A publica\u00e7\u00e3o termina com um pedido para que internautas compartilhem o v\u00eddeo e marquem as institui\u00e7\u00f5es envolvidas, na esperan\u00e7a de sensibilizar os pesquisadores e acelerar a an\u00e1lise do caso de Lito Sousa.<\/p>","protected":false},"excerpt":{"rendered":"<p>O influenciador digital e ex-mec\u00e2nico de avia\u00e7\u00e3o Lito Sousa fez, neste domingo (23), sua primeira apari\u00e7\u00e3o p\u00fablica desde que teve o diagn\u00f3stico de doen\u00e7a de Creutzfeldt-Jakob (DCJ) divulgado pela fam\u00edlia. Em um v\u00eddeo publicado nas redes sociais, ele faz um apelo urgente para ter acesso a um tratamento experimental que est\u00e1 sendo desenvolvido por pesquisadores [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":305813,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[173],"tags":[21625],"class_list":["post-305814","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-celebridades","tag-lito-sousa"],"_links":{"self":[{"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/posts\/305814","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/comments?post=305814"}],"version-history":[{"count":2,"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/posts\/305814\/revisions"}],"predecessor-version":[{"id":305816,"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/posts\/305814\/revisions\/305816"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/media\/305813"}],"wp:attachment":[{"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/media?parent=305814"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/categories?post=305814"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/portalpopmais.com.br\/en\/wp-json\/wp\/v2\/tags?post=305814"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}