{"id":3983,"date":"2018-09-18T09:26:52","date_gmt":"2018-09-18T09:26:52","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/09\/18\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\/"},"modified":"2018-09-18T09:26:52","modified_gmt":"2018-09-18T09:26:52","slug":"celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/09\/18\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\/","title":{"rendered":"Celebramos el D\u00eda Mundial del S\u00edndrome de Pitt Hopkins"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>El 18 de septiembre, desde FEDER nos adherimos al D\u00eda Mundial del S\u00edndrome de Pitt Hopkins, una enfermedad poco frecuente que cuenta con alrededor de 50 casos en todo el mundo.<\/p>\n<p>El s\u00edndrome de Pitt Hopkins (SPH) se caracteriza &#8211;<span style=\"text-decoration: underline\"><a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease_Search.php?lng=ES&amp;data_id=2624&amp;Disease_Disease_Search_diseaseGroup=pitt-Hopkins&amp;Disease_Disease_Search_diseaseType=Pat&amp;Enfermedad(es)\/grupo%20de%20enfermedades=S-ndrome-de-Pitt-Hopkins&amp;title=S%EDndrome%20de%20Pitt%20Hopkins&amp;search=Disease_Search_Simple\" target=\"_blank\">tal y como define Orphanet<\/a><\/span>&#8211; por la asociaci\u00f3n de d\u00e9ficit intelectual, dismorfia facial caracter\u00edstica y un patr\u00f3n de respiraci\u00f3n anormal e irregular. Los problemas psicomotores son tempranos y graves, e incluyen: hipoton\u00eda, marcha inestable y adquirida tard\u00edamente y ausencia de lenguaje. La prensi\u00f3n voluntaria se conserva y no hay malformaciones asociadas. Son frecuientes el estre\u00f1imiento grave y el reflujo gastro-esof\u00e1gico. Tambi\u00e9n son comunes: microcefalia, retraso en el crecimiento postnatal y crisis epil\u00e9pticas graves de tipo t\u00f3nico-cl\u00f3nico.<\/p>\n<p>En casos aislados se han observado: m\u00e1culas cut\u00e1neas hipopigmentadas, miop\u00eda fuerte, pene peque\u00f1o y criptorquidia. Los problemas respiratorios suelen aparecer en la infancia o adolescencia y s\u00f3lo ocurren cuando el paciente est\u00e1 despierto. Se caracterizan por ataques de hiperventilaci\u00f3n, a menudo seguidos de apnea y cianosis.&nbsp;<\/p>\n<p>En este marco, nos sumamos a todas las familias que conviven con este s\u00edndrome en nuestro pa\u00eds y queremos reconocer el trabajo del tejido asociativo que trabaja por mejorar su calidad de vida:&nbsp;AFEC18 (Asociaci\u00f3n Nacional de Afectados, Familiares y Amigos del Cromosoma 18) y&nbsp;GUADAERA (Asociaci\u00f3n de Enfermedades Raras de Guadalajara).<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 18\/09\/2018.<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/11138-celebramos-el-d%C3%ADa-mundial-del-s%C3%ADndrome-de-pitt-hopkins\" target=\"_blank\">Celebramos el D\u00eda Mundial del S\u00edndrome de Pitt Hopkins<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 18 de septiembre, desde FEDER nos adherimos al D\u00eda Mundial del S\u00edndrome de Pitt Hopkins, una enfermedad poco frecuente que cuenta con alrededor de 50 casos en todo el mundo. El s\u00edndrome de Pitt Hopkins (SPH) se caracteriza &#8211;tal y como define [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-3983","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Celebramos el D\u00eda Mundial del S\u00edndrome de Pitt Hopkins - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2018\/09\/18\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Celebramos el D\u00eda Mundial del S\u00edndrome de Pitt Hopkins - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 18 de septiembre, desde FEDER nos adherimos al D\u00eda Mundial del S\u00edndrome de Pitt Hopkins, una enfermedad poco frecuente que cuenta con alrededor de 50 casos en todo el mundo. El s\u00edndrome de Pitt Hopkins (SPH) se caracteriza &#8211;tal y como define [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2018\/09\/18\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\/\" \/>\n<meta property=\"og:site_name\" content=\"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/asociacionsindromecharge\" \/>\n<meta property=\"article:published_time\" content=\"2018-09-18T09:26:52+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2013\/09\/logodecharge300x98.png\" \/>\n\t<meta property=\"og:image:width\" content=\"300\" \/>\n\t<meta property=\"og:image:height\" content=\"98\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Charge\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:site\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Charge\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minuto\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/09\\\/18\\\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/09\\\/18\\\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Celebramos el D\u00eda Mundial del S\u00edndrome de Pitt Hopkins\",\"datePublished\":\"2018-09-18T09:26:52+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/09\\\/18\\\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\\\/\"},\"wordCount\":281,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/09\\\/18\\\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/09\\\/18\\\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/09\\\/18\\\/celebramos-el-dia-mundial-del-sindrome-de-pitt-hopkins\\\/\",\"name\":\"Celebramos el D\u00eda Mundial del S\u00edndrome de Pitt Hopkins - 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