{"id":257657,"date":"2026-09-23T07:30:00","date_gmt":"2026-09-23T11:30:00","guid":{"rendered":"https:\/\/www.cuballama.com\/noticias\/?p=257657"},"modified":"2026-09-23T01:14:08","modified_gmt":"2026-09-23T05:14:08","slug":"piden-ayuda-para-bebe-cubano-con-piel-de-mariposa","status":"publish","type":"post","link":"https:\/\/www.cuballama.com\/noticias\/piden-ayuda-para-bebe-cubano-con-piel-de-mariposa\/","title":{"rendered":"Piden ayuda para beb\u00e9 cubano con \u201cpiel de mariposa\u201d"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Varios cubanos han acudido a redes sociales para pedir ayuda para un beb\u00e9 que padece epiderm\u00f3lisis bullosa, una rara enfermedad gen\u00e9tica conocida como \u201cpiel de mariposa\u201d o \u201cpiel de cristal\u201d.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Seg\u00fan detall\u00f3 en Facebook Shakira Ochoa, el peque\u00f1o, natural de la localidad El R\u00edo, en el municipio de Yaguajay, en Sancti Sp\u00edritus, naci\u00f3 con esta enfermedad degenerativa e incurable, que puede causar heridas externas e internas hasta en el 80% del cuerpo.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u201cNecesitan gentamicina, hidrocortisona, triple antibi\u00f3tico, vaselina y gel de ba\u00f1o con pH neutro\u201d, precis\u00f3 la activista.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u201cS\u00e9 que la situaci\u00f3n est\u00e1 dura para todos, pero hay otros que la llevan peor. Aportar un granito de arena a una causa como esta no est\u00e1 de m\u00e1s nunca. No sabemos cu\u00e1ndo seremos nosotros los necesitados\u201d, expres\u00f3 la joven.&nbsp;<\/p>\n\n\n\n<iframe loading=\"lazy\" src=\"https:\/\/www.facebook.com\/plugins\/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fpermalink.php%3Fstory_fbid%3Dpfbid05ULmpTcxpUUTyhmDRUScLPswAuKajN742U61c7MDfLwhfon2eqeuMLaYqohELi2Dl%26id%3D100081894256870&#038;show_text=true&#038;width=500\" width=\"500\" height=\"683\" style=\"border:none;overflow:hidden\" scrolling=\"no\" frameborder=\"0\" allowfullscreen=\"true\" allow=\"autoplay; clipboard-write; encrypted-media; picture-in-picture; web-share\"><\/iframe>\n\n\n\n<p class=\"wp-block-paragraph\">Desde La Habana, Ochoa comparti\u00f3 tres n\u00fameros distintos para donar: el suyo, +53 54358050; el de Misleydis D\u00edaz, la t\u00eda del beb\u00e9, quien se encarga del ni\u00f1o, +53 5 9063113; y el de Daniela Mat\u00edas, quien se encuentra en Estados Unidos, +1 (954) 766-5412.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La epiderm\u00f3lisis bullosa provoca una fragilidad extrema en la piel y las membranas mucosas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Se caracteriza por la formaci\u00f3n de ampollas, \u00falceras y heridas dolorosas al menor roce o fricci\u00f3n; y, en casos severos, por provocar da\u00f1os en \u00f3rganos internos, p\u00e9rdida de u\u00f1as, estenosis esof\u00e1gica y graves dificultades alimenticias.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Como el m\u00e1s m\u00ednimo roce provoca heridas y ampollas a quienes las padecen, deben someterse a curas diarias que pueden durar horas y acciones tan cotidianas como comer, ducharse o vestirse se hacen un aut\u00e9ntico reto.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En cualquier caso, se trata de un padecimiento que es sumamente caro de tratar en todo el mundo y especialmente en un pa\u00eds como Cuba, sumido en una profunda crisis.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>El peque\u00f1o vive en el municipio de Yaguajay, en Sancti Sp\u00edritus.<\/p>\n","protected":false},"author":30,"featured_media":257658,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[18,955],"tags":[26155,10867,941,7966,34730,38186],"class_list":["post-257657","post","type-post","status-publish","format-standard","has-post-thumbnail","category-noticias","category-noticias-de-cuba","tag-bebe-cubano","tag-crisis-en-cuba","tag-destacado","tag-enfermedad-rara","tag-escasez-de-medicamentos-en-cuba","tag-piel-de-mariposa"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - 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