{"id":10559,"date":"2024-11-13T06:22:57","date_gmt":"2024-11-13T06:22:57","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2024\/11\/13\/luis-aguilar-riesgo-desarrollar-enfermedad-huntington\/"},"modified":"2024-11-13T06:22:57","modified_gmt":"2024-11-13T06:22:57","slug":"luis-aguilar-riesgo-desarrollar-enfermedad-huntington","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2024\/11\/13\/luis-aguilar-riesgo-desarrollar-enfermedad-huntington\/","title":{"rendered":"Luis Aguilar, en riesgo de desarrollar la enfermedad de Huntington: \u00abHay m\u00e1s esperanza que hace unos a\u00f1os\u00bb"},"content":{"rendered":"

Leemos en Discapacidad la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

\n

La enfermedad de Huntington<\/b> es, despu\u00e9s del alzh\u00e9imer<\/a> y el p\u00e1rkinson<\/a>, la tercera enfermedad neurodegerenativa m\u00e1s frecuente. Una enfermedad que, al ser de origen gen\u00e9tico<\/b>, se puede trasmitir de padres a hijos con una probabilidad del 50%. De hecho, se calcula que unas 14.000 personas en Espa\u00f1a est\u00e1n en riesgo de desarrollarla por tener progenitores enfermos.<\/p>\n

Una simple prueba gen\u00e9tica<\/b> sirve para despejar las dudas sobre si se ha heredado o no la enfermedad, pero muchas de estas personas en riesgo prefieren no lanzar esa moneda al aire, pues en la actualidad no existen tratamientos espec\u00edficos y eficaces que la frenen o mejoren sus s\u00edntomas.<\/p>\n

Una de esas personas es Luis Aguilar <\/b>que, adem\u00e1s de decidir no hacerse la prueba que despejar\u00eda -o no- muchas dudas sobre su futuro, ha plasmado en un libro, Cr\u00f3nica de una suerte anunciada<\/i>, las emociones y sentimientos que, desde adolescente, ha provocado en \u00e9l la enfermedad de su padre.<\/p>\n

El autor, que colabora desde con ellas, destinar\u00e1 todos los beneficios de esta obra a la Asociaci\u00f3n Espa\u00f1ola Corea Huntington ACHE y a la EHA <\/b>(Asociaci\u00f3n Europea de Huntigton). <\/p>\n

Escribir este libro me sirvi\u00f3 para descubrir cosas de m\u00ed mismo, de mi padre\u2026 y para poner en palabras a cosas que llevaba sintiendo toda mi vida<\/h1>\n

Soy muy consciente de que todos estamos aqu\u00ed de paso y no quiero hacerme la prueba y que, si es negativa, me haga pensar que soy eterno<\/h1>\n

Pas\u00e9 de no querer saber nada de la enfermedad a acercarme a la asociaci\u00f3n, escribir un libro\u2026 pero hay cosas para las que a\u00fan no estoy preparado, como acompa\u00f1ar a los pacientes<\/h1>\n<\/div>\n

Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5652914\/0\/luis-aguilar-riesgo-desarrollar-enfermedad-huntington\/<\/p>\n","protected":false},"excerpt":{"rendered":"

Luis Aguilar Vera es el autor del libro ‘Cr\u00f3nica de suerte anunciada’, donde habla de su experiencia como persona en riesgo de desarrollar esta enfermedad neurodegenerativa.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[],"class_list":["post-10559","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"\nLuis Aguilar, en riesgo de desarrollar la enfermedad de Huntington: "Hay m\u00e1s esperanza que hace unos a\u00f1os" - 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\/2024\/11\/13\/luis-aguilar-riesgo-desarrollar-enfermedad-huntington\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Luis Aguilar, en riesgo de desarrollar la enfermedad de Huntington: "Hay m\u00e1s esperanza que hace unos a\u00f1os" - 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