{"id":2711,"date":"2025-02-12T18:23:49","date_gmt":"2025-02-13T00:23:49","guid":{"rendered":"https:\/\/stacatarina.mx\/consejos\/que-es-el-nublp-la-rara-enfermedad-de-elena-delepiane-que-murio-con-solo-18-anos\/"},"modified":"2025-02-12T18:23:50","modified_gmt":"2025-02-13T00:23:50","slug":"que-es-el-nublp-la-rara-enfermedad-de-elena-delepiane-que-murio-con-solo-18-anos","status":"publish","type":"post","link":"https:\/\/stacatarina.mx\/consejos\/que-es-el-nublp-la-rara-enfermedad-de-elena-delepiane-que-murio-con-solo-18-anos\/","title":{"rendered":"\u00bfQu\u00e9 es el NUBLP: la rara enfermedad de Elena Delepiane, que muri\u00f3 con solo 18 a\u00f1os?"},"content":{"rendered":"<p class=\"single-abstract\">\n<p>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\tElena Delepiane muri\u00f3 a los 18 a\u00f1os: fue afectada por el Nubpl, una mitocondriopat\u00eda gen\u00e9ticamente determinada. Se hab\u00eda hecho famosa en las redes sociales, donde mam\u00e1 comparti\u00f3 su vida diaria en el &#8220;diario del diario de una madre rara&#8221;\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/p>\n<div class=\"daily-video\" style=\"display: none;\"><\/div>\n<div class=\"wrapper-player\" style=\"display: none; margin-bottom: 15px;\">\n<div id=\"daily-player\" style=\"position: relative; max-width: 100%;\" class=\"video-content\"><\/div>\n<\/p><\/div>\n<div class=\"image-wrapper featured-image no-lazy\" id=\"featured-image\"><\/div>\n<p><strong>Elena dellepiane<\/strong> Ella muri\u00f3 a la edad de 18 a\u00f1os debido a la <strong>Nubpl<\/strong>uno <strong>enfermedad mitocondrial muy rara<\/strong> quien la acompa\u00f1\u00f3 a lo largo de su vida. Su historia ha trasladado a miles de personas, convirti\u00e9ndose en un s\u00edmbolo de una batalla no solo personal, sino tambi\u00e9n colectivo, gracias al compromiso incansable de la Madre Andrea para crear conciencia sobre esta patolog\u00eda.<\/p>\n<p>Elena fue el \u00fanico caso en Italia de esta mitocondriopat\u00eda gen\u00e9ticamente determinada gen\u00e9ticamente, una enfermedad neurodegenerativa que <strong>Evita que las c\u00e9lulas produzcan la energ\u00eda necesaria para el funcionamiento correcto de los \u00f3rganos<\/strong>. Esto implic\u00f3 un <strong>arresto al crecimiento<\/strong> Y una serie de complicaciones, incluida la hipoton\u00eda muscular, la epilepsia, los problemas renales y respiratorios.<\/p>\n<p>A pesar de las dificultades, Elena enfrent\u00f3 la vida con una fuerza extraordinaria, siempre apoyada por el amor de su familia y la calidez de la comunidad que se ha apretado a su alrededor a trav\u00e9s de las redes sociales. La historia de su vida diaria fue compartida por la madre en la p\u00e1gina <strong>&#8220;Diario de una madre rara<\/strong>&#8220;, Un espacio que con el tiempo se ha convertido en un punto de referencia para aquellos que viven situaciones similares.<\/p>\n<aside style=\"margin: 8px auto; text-align: center; display: block; clear: both;\">\n<div id=\"gpt-passback\">\n<\/div>\n<\/aside>\n<h2>El proyecto &#8220;Il Sorriso di Elena&#8221; para la investigaci\u00f3n sobre enfermedades raras<\/h2>\n<p>A trav\u00e9s de las redes sociales, Andrea mostr\u00f3 la realidad de una enfermedad poco conocida, sensibilizando al p\u00fablico E <strong>Recaudar fondos para la investigaci\u00f3n<\/strong>. Es gracias a estas iniciativas que la <strong>Primer proyecto de investigaci\u00f3n multidisciplinario en el NUBPL<\/strong> En Italia, en la Universidad de Verona, con el objetivo de comprender mejor la enfermedad y desarrollar posibles tratamientos.<\/p>\n<p>Elena ha crecido sin problemas particulares <strong>hasta 18 meses<\/strong>cuando una broncopulmonitis llev\u00f3 a los m\u00e9dicos a descubrir anomal\u00edas en sus pruebas cl\u00ednicas. Desde ese momento comenz\u00f3 una larga ruta de diagn\u00f3stico que involucr\u00f3 a varios hospitales y centros de investigaci\u00f3n internacionales, hasta <strong>Confirmaci\u00f3n de la enfermedad en 2016<\/strong>. A pesar de las dificultades, su familia nunca se ha rendido, luchando por garantizarle el mejor apoyo posible.<\/p>\n<p>&#8220;<em>Ahora cantar\u00e1s con los \u00e1ngeles<\/em>&#8220;, Escribi\u00f3 la madre en su mensaje de despedida, una \u00faltima despedida que contiene todo el amor y la fuerza con los que enfrent\u00f3 esta batalla. Elena deja un gran vac\u00edo, pero tambi\u00e9n un legado importante: la conciencia de que la investigaci\u00f3n sobre enfermedades raras <strong>debe seguir siendo una prioridad<\/strong>. La memoria de Elena continuar\u00e1 viviendo el proyecto <strong>&#8220;La sonrisa de Elena&#8221;<\/strong>una iniciativa que quiere mantener viva la esperanza para el futuro de la investigaci\u00f3n sobre enfermedades raras.<\/p>\n<div class=\"wordpress responsive-container\">\n<blockquote class=\"instagram-media\" data-instgrm-captioned data-instgrm-permalink=\"https:\/\/www.instagram.com\/p\/DF2iLxJMB-8\/?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:500px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\">\n<div style=\"padding:16px;\">\n<div style=\" display: flex; flex-direction: row; align-items: center;\">\n<div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div>\n<div style=\"display: flex; 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font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\">Ver esta publicaci\u00f3n en Instagram<\/div>\n<\/div>\n<div style=\"padding: 12.5% 0;\"><\/div>\n<div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\">\n<div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div>\n<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>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div>\n<\/div>\n<div style=\"margin-left: 8px;\">\n<div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 2px solid transparent; 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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;\">Una publicaci\u00f3n compartida por el diario de una madre rara (@ildariodiunamamarara)<\/p>\n<\/div>\n<\/blockquote>\n<\/div>\n<\/p>\n<p><script async src=\"\/\/www.instagram.com\/embed.js\"><\/script><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Elena Delepiane muri\u00f3 a los 18 a\u00f1os: fue afectada por el Nubpl, una mitocondriopat\u00eda gen\u00e9ticamente determinada. Se hab\u00eda hecho famosa en las redes sociales, donde<\/p>\n","protected":false},"author":1,"featured_media":2712,"comment_status":"closed","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[762],"tags":[209,42,3664,3663,810,2479,3662,247,3202,628],"class_list":["post-2711","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-salud","tag-anos","tag-con","tag-delepiane","tag-elena","tag-enfermedad","tag-murio","tag-nublp","tag-que","tag-rara","tag-solo","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-50"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.4 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>\u00bfQu\u00e9 es el NUBLP: la rara enfermedad de Elena Delepiane, que muri\u00f3 con solo 18 a\u00f1os? - Consejos - Santa Catarina<\/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:\/\/stacatarina.mx\/consejos\/que-es-el-nublp-la-rara-enfermedad-de-elena-delepiane-que-murio-con-solo-18-anos\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u00bfQu\u00e9 es el NUBLP: la rara enfermedad de Elena Delepiane, que muri\u00f3 con solo 18 a\u00f1os? - Consejos - Santa Catarina\" \/>\n<meta property=\"og:description\" content=\"Elena Delepiane muri\u00f3 a los 18 a\u00f1os: fue afectada por el Nubpl, una mitocondriopat\u00eda gen\u00e9ticamente determinada. 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