{"id":848,"date":"2021-03-05T16:15:22","date_gmt":"2021-03-05T16:15:22","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?page_id=848"},"modified":"2026-07-16T10:51:54","modified_gmt":"2026-07-16T09:51:54","slug":"welcome","status":"publish","type":"page","link":"https:\/\/ring20researchsupport.co.uk\/pt\/for-families\/welcome\/","title":{"rendered":"Recentemente diagnosticado"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"848\" class=\"elementor elementor-848\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-e3217b2 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e3217b2\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-02cd945\" data-id=\"02cd945\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-f55ab02 elementor-widget elementor-widget-text-editor\" data-id=\"f55ab02\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Se voc\u00ea acabou de receber um diagn\u00f3stico de s\u00edndrome r(20) para voc\u00ea ou seu filho, entendemos que este pode ser um momento preocupante para voc\u00ea, \u00e0 medida que voc\u00ea aceita essa not\u00edcia. N\u00e3o se preocupe, \u00e9 por isso que estamos aqui para ajud\u00e1-lo!<\/p><p>Algumas pessoas recebem um diagn\u00f3stico dentro de um curto per\u00edodo de tempo ap\u00f3s o in\u00edcio das convuls\u00f5es, mas para a maioria das pessoas elas convivem com seus sintomas h\u00e1 v\u00e1rios anos. Isso n\u00e3o torna mais f\u00e1cil descobrir que voc\u00ea tem s\u00edndrome r(20), porque em todos os casos h\u00e1 informa\u00e7\u00f5es muito limitadas dispon\u00edveis para sua equipe m\u00e9dica - na verdade, voc\u00ea pode ser o primeiro caso de r(20) que eles t\u00eam tratados em sua carreira m\u00e9dica.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cd1e1ae elementor-widget elementor-widget-heading\" data-id=\"cd1e1ae\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Baixe nossos Pacotes de Boas-Vindas<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-bce0fa2 elementor-widget elementor-widget-text-editor\" data-id=\"bce0fa2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Temos duas folhas de boas-vindas para download para voc\u00ea come\u00e7ar a se manter atualizado com tudo o que est\u00e1 acontecendo no Ring20 e como se conectar com outras fam\u00edlias r(20) e participar da conversa - quando estiver pronto, \u00e9 claro !<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ad064eb elementor-widget__width-initial elementor-widget elementor-widget-button\" data-id=\"ad064eb\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Welcome-to-Ring20_1.pdf\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">mantenha-se informado<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7ad0ac3 elementor-widget__width-initial elementor-widget elementor-widget-button\" data-id=\"7ad0ac3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/welcome-pack-2_AW.pdf\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">conecte-se<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-8f804ab\" data-id=\"8f804ab\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-784c777 elementor-widget elementor-widget-image\" data-id=\"784c777\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"954\" height=\"1024\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-954x1024.jpg\" class=\"attachment-large size-large wp-image-5259\" alt=\"\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-954x1024.jpg.webp 954w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-279x300.jpg.webp 279w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-768x825.jpg.webp 768w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-11x12.jpg.webp 11w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-600x644.jpg.webp 600w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis.jpg.webp 1407w\" sizes=\"(max-width: 954px) 100vw, 954px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5604e78 elementor-section-stretched elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5604e78\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;stretch_section&quot;:&quot;section-stretched&quot;,&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-85b9fcc\" data-id=\"85b9fcc\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-c2eb29d elementor-widget elementor-widget-heading\" data-id=\"c2eb29d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Alguns r(20) fatos e n\u00fameros<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-86d7735 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"86d7735\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-globe-europe\" viewbox=\"0 0 496 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M248 8C111 8 0 119 0 256s111 248 248 248 248-111 248-248S385 8 248 8zm200 248c0 22.5-3.9 44.2-10.8 64.4h-20.3c-4.3 0-8.4-1.7-11.4-4.8l-32-32.6c-4.5-4.6-4.5-12.1.1-16.7l12.5-12.5v-8.7c0-3-1.2-5.9-3.3-8l-9.4-9.4c-2.1-2.1-5-3.3-8-3.3h-16c-6.2 0-11.3-5.1-11.3-11.3 0-3 1.2-5.9 3.3-8l9.4-9.4c2.1-2.1 5-3.3 8-3.3h32c6.2 0 11.3-5.1 11.3-11.3v-9.4c0-6.2-5.1-11.3-11.3-11.3h-36.7c-8.8 0-16 7.2-16 16v4.5c0 6.9-4.4 13-10.9 15.2l-31.6 10.5c-3.3 1.1-5.5 4.1-5.5 7.6v2.2c0 4.4-3.6 8-8 8h-16c-4.4 0-8-3.6-8-8s-3.6-8-8-8H247c-3 0-5.8 1.7-7.2 4.4l-9.4 18.7c-2.7 5.4-8.2 8.8-14.3 8.8H194c-8.8 0-16-7.2-16-16V199c0-4.2 1.7-8.3 4.7-11.3l20.1-20.1c4.6-4.6 7.2-10.9 7.2-17.5 0-3.4 2.2-6.5 5.5-7.6l40-13.3c1.7-.6 3.2-1.5 4.4-2.7l26.8-26.8c2.1-2.1 3.3-5 3.3-8 0-6.2-5.1-11.3-11.3-11.3H258l-16 16v8c0 4.4-3.6 8-8 8h-16c-4.4 0-8-3.6-8-8v-20c0-2.5 1.2-4.9 3.2-6.4l28.9-21.7c1.9-.1 3.8-.3 5.7-.3C358.3 56 448 145.7 448 256zM130.1 149.1c0-3 1.2-5.9 3.3-8l25.4-25.4c2.1-2.1 5-3.3 8-3.3 6.2 0 11.3 5.1 11.3 11.3v16c0 3-1.2 5.9-3.3 8l-9.4 9.4c-2.1 2.1-5 3.3-8 3.3h-16c-6.2 0-11.3-5.1-11.3-11.3zm128 306.4v-7.1c0-8.8-7.2-16-16-16h-20.2c-10.8 0-26.7-5.3-35.4-11.8l-22.2-16.7c-11.5-8.6-18.2-22.1-18.2-36.4v-23.9c0-16 8.4-30.8 22.1-39l42.9-25.7c7.1-4.2 15.2-6.5 23.4-6.5h31.2c10.9 0 21.4 3.9 29.6 10.9l43.2 37.1h18.3c8.5 0 16.6 3.4 22.6 9.4l17.3 17.3c3.4 3.4 8.1 5.3 12.9 5.3H423c-32.4 58.9-93.8 99.5-164.9 103.1z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tAinda n\u00e3o sabemos quantas pessoas t\u00eam r(20), embora existam aproximadamente 200 casos de s\u00edndrome r(20) citados na literatura m\u00e9dica em todo o mundo\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-acc277e elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"acc277e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tOs principais sintomas de r(20) s\u00e3o:\n<ul><li>dif\u00edcil de tratar convuls\u00f5es (muitas vezes pior \u00e0 noite)<\/li>\n<li>comprometimento cognitivo\/decl\u00ednio (ap\u00f3s o in\u00edcio da convuls\u00e3o)<\/li>\n<li>transtorno de comportamento<\/li><\/ul>\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3fbb517 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"3fbb517\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-question-circle\" viewbox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M504 256c0 136.997-111.043 248-248 248S8 392.997 8 256C8 119.083 119.043 8 256 8s248 111.083 248 248zM262.655 90c-54.497 0-89.255 22.957-116.549 63.758-3.536 5.286-2.353 12.415 2.715 16.258l34.699 26.31c5.205 3.947 12.621 3.008 16.665-2.122 17.864-22.658 30.113-35.797 57.303-35.797 20.429 0 45.698 13.148 45.698 32.958 0 14.976-12.363 22.667-32.534 33.976C247.128 238.528 216 254.941 216 296v4c0 6.627 5.373 12 12 12h56c6.627 0 12-5.373 12-12v-1.333c0-28.462 83.186-29.647 83.186-106.667 0-58.002-60.165-102-116.531-102zM256 338c-25.365 0-46 20.635-46 46 0 25.364 20.635 46 46 46s46-20.636 46-46c0-25.365-20.635-46-46-46z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tOs sintomas variam de pessoa para pessoa e h\u00e1 um amplo espectro entre aqueles que s\u00e3o levemente afetados at\u00e9 os mais severamente afetados.\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1b67c2f elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"1b67c2f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-adjust\" viewbox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M8 256c0 136.966 111.033 248 248 248s248-111.034 248-248S392.966 8 256 8 8 119.033 8 256zm248 184V72c101.705 0 184 82.311 184 184 0 101.705-82.311 184-184 184z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tExistem 2 formas de s\u00edndrome r(20):\n<ul><li>mosaico (% de c\u00e9lulas afetadas pelo anel)<\/li>\n<li>n\u00e3o-mosaico (anel encontrado em todas as c\u00e9lulas - in\u00edcio de convuls\u00e3o tipicamente mais jovem e sintomas mais graves)<\/li>\n<\/ul>\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1c3ff98 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"1c3ff98\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-child\" viewbox=\"0 0 384 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M120 72c0-39.765 32.235-72 72-72s72 32.235 72 72c0 39.764-32.235 72-72 72s-72-32.236-72-72zm254.627 1.373c-12.496-12.497-32.758-12.497-45.254 0L242.745 160H141.254L54.627 73.373c-12.496-12.497-32.758-12.497-45.254 0-12.497 12.497-12.497 32.758 0 45.255L104 213.254V480c0 17.673 14.327 32 32 32h16c17.673 0 32-14.327 32-32V368h16v112c0 17.673 14.327 32 32 32h16c17.673 0 32-14.327 32-32V213.254l94.627-94.627c12.497-12.497 12.497-32.757 0-45.254z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tA s\u00edndrome r(20) raramente \u00e9 herdada\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9d54fdd elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"9d54fdd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-pills\" viewbox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M112 32C50.1 32 0 82.1 0 144v224c0 61.9 50.1 112 112 112s112-50.1 112-112V144c0-61.9-50.1-112-112-112zm48 224H64V144c0-26.5 21.5-48 48-48s48 21.5 48 48v112zm139.7-29.7c-3.5-3.5-9.4-3.1-12.3.8-45.3 62.5-40.4 150.1 15.9 206.4 56.3 56.3 143.9 61.2 206.4 15.9 4-2.9 4.3-8.8.8-12.3L299.7 226.3zm229.8-19c-56.3-56.3-143.9-61.2-206.4-15.9-4 2.9-4.3 8.8-.8 12.3l210.8 210.8c3.5 3.5 9.4 3.1 12.3-.8 45.3-62.6 40.5-150.1-15.9-206.4z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tN\u00e3o h\u00e1 tratamento recomendado para a s\u00edndrome r(20)\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ae3ffbc elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"ae3ffbc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-brain\" viewbox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M208 0c-29.9 0-54.7 20.5-61.8 48.2-.8 0-1.4-.2-2.2-.2-35.3 0-64 28.7-64 64 0 4.8.6 9.5 1.7 14C52.5 138 32 166.6 32 200c0 12.6 3.2 24.3 8.3 34.9C16.3 248.7 0 274.3 0 304c0 33.3 20.4 61.9 49.4 73.9-.9 4.6-1.4 9.3-1.4 14.1 0 39.8 32.2 72 72 72 4.1 0 8.1-.5 12-1.2 9.6 28.5 36.2 49.2 68 49.2 39.8 0 72-32.2 72-72V64c0-35.3-28.7-64-64-64zm368 304c0-29.7-16.3-55.3-40.3-69.1 5.2-10.6 8.3-22.3 8.3-34.9 0-33.4-20.5-62-49.7-74 1-4.5 1.7-9.2 1.7-14 0-35.3-28.7-64-64-64-.8 0-1.5.2-2.2.2C422.7 20.5 397.9 0 368 0c-35.3 0-64 28.6-64 64v376c0 39.8 32.2 72 72 72 31.8 0 58.4-20.7 68-49.2 3.9.7 7.9 1.2 12 1.2 39.8 0 72-32.2 72-72 0-4.8-.5-9.5-1.4-14.1 29-12 49.4-40.6 49.4-73.9z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tSabemos que as pessoas com s\u00edndrome r(20) t\u00eam convuls\u00f5es, mas ainda n\u00e3o sabemos por que a forma\u00e7\u00e3o do anel causa isso.\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-832d8d8 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"832d8d8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-clock\" viewbox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M256,8C119,8,8,119,8,256S119,504,256,504,504,393,504,256,393,8,256,8Zm92.49,313h0l-20,25a16,16,0,0,1-22.49,2.5h0l-67-49.72a40,40,0,0,1-15-31.23V112a16,16,0,0,1,16-16h32a16,16,0,0,1,16,16V256l58,42.5A16,16,0,0,1,348.49,321Z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tAinda n\u00e3o podemos descrever como a doen\u00e7a ir\u00e1 progredir ao longo do tempo\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5eff064 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"5eff064\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-user-plus\" viewbox=\"0 0 640 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M624 208h-64v-64c0-8.8-7.2-16-16-16h-32c-8.8 0-16 7.2-16 16v64h-64c-8.8 0-16 7.2-16 16v32c0 8.8 7.2 16 16 16h64v64c0 8.8 7.2 16 16 16h32c8.8 0 16-7.2 16-16v-64h64c8.8 0 16-7.2 16-16v-32c0-8.8-7.2-16-16-16zm-400 48c70.7 0 128-57.3 128-128S294.7 0 224 0 96 57.3 96 128s57.3 128 128 128zm89.6 32h-16.7c-22.2 10.2-46.9 16-72.9 16s-50.6-5.8-72.9-16h-16.7C60.2 288 0 348.2 0 422.4V464c0 26.5 21.5 48 48 48h352c26.5 0 48-21.5 48-48v-41.6c0-74.2-60.2-134.4-134.4-134.4z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tMuitas pessoas com s\u00edndrome r(20) precisar\u00e3o de apoio na educa\u00e7\u00e3o e\/ou trabalho\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-fc355aa elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"fc355aa\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-138fe99\" data-id=\"138fe99\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-bb05a6a elementor-widget elementor-widget-heading\" data-id=\"bb05a6a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Ring20 - aqui para ajudar!<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b24b3e3 elementor-widget elementor-widget-text-editor\" data-id=\"b24b3e3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Embora ainda n\u00e3o saibamos muito sobre a s\u00edndrome r(20), suas causas e como tratar as pessoas, n\u00e3o se desespere. H\u00e1 muito que podemos fazer e estamos fazendo para apoiar voc\u00ea e fam\u00edlias como voc\u00ea\u2026<\/p>\n<p>Quando estiver pronto, confira as seguintes p\u00e1ginas em nosso site:<\/p>\n<ul>\n<li><a href=\"https:\/\/ring20researchsupport.co.uk\/pt\/for-families\/flo_project\/\" target=\"_blank\">Projeto de Liga\u00e7\u00e3o com as Fam\u00edlias<\/a>&nbsp;Acesse a p\u00e1gina para obter suporte personalizado da nossa Oficial de Liga\u00e7\u00e3o com as Fam\u00edlias, Sarah.&nbsp;<\/li>\n<li><a href=\"https:\/\/ring20researchsupport.co.uk\/pt\/r20-syndrome\/\">s\u00edndrome r(20)<\/a> p\u00e1ginas para tudo o que voc\u00ea precisa saber sobre seu diagn\u00f3stico<\/li>\n<li><a href=\"https:\/\/ring20researchsupport.co.uk\/pt\/for-families\/\">Para fam\u00edlias<\/a> p\u00e1ginas sobre como o Ring20 pode apoiar voc\u00ea e sua fam\u00edlia<\/li>\n<li><a href=\"https:\/\/ring20researchsupport.co.uk\/pt\/research\/\">Pesquisa<\/a> p\u00e1ginas para projetos de pesquisa em andamento para tentar encontrar melhorias no diagn\u00f3stico, tratamento e gest\u00e3o de r(20)<\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-95383da\" data-id=\"95383da\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-214eda9 elementor-widget elementor-widget-image\" data-id=\"214eda9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"1024\" height=\"391\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-1024x391.jpg\" class=\"attachment-large size-large wp-image-6299\" alt=\"\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-1024x391.jpg.webp 1024w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-300x115.jpg.webp 300w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-768x293.jpg.webp 768w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-1536x586.jpg.webp 1536w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-2048x782.jpg.webp 2048w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-16x6.jpg.webp 16w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-600x229.jpg.webp 600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>If you&#8217;ve just received a diagnosis of r(20) syndrome for yourself or your child we understand that this can be a worrying time for you, as you come to terms with this news. Don&#8217;t worry, that&#8217;s why we are here to help you! Some people receive a diagnosis within a short amount of time after [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":74,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-848","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Newly Diagnosed - Ring20 Research and Support UK CIO<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ring20researchsupport.co.uk\/pt\/for-families\/welcome\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Newly Diagnosed - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"If you&#8217;ve just received a diagnosis of r(20) syndrome for yourself or your child we understand that this can be a worrying time for you, as you come to terms with this news. Don&#8217;t worry, that&#8217;s why we are here to help you! Some people receive a diagnosis within a short amount of time after [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ring20researchsupport.co.uk\/pt\/for-families\/welcome\/\" \/>\n<meta property=\"og:site_name\" content=\"Ring20 Research and Support UK CIO\" \/>\n<meta property=\"article:modified_time\" content=\"2026-07-16T09:51:54+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1407\" \/>\n\t<meta property=\"og:image:height\" content=\"1511\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Tempo estimado de leitura\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/for-families\\\/welcome\\\/\",\"url\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/for-families\\\/welcome\\\/\",\"name\":\"Newly Diagnosed - 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