{"id":15083,"date":"2022-06-14T20:42:45","date_gmt":"2022-06-14T20:42:45","guid":{"rendered":"https:\/\/dupmecp2.eu\/un-periodico-aleman-rtl-habla-del-sindrome-de-duplicacion-mecp2\/"},"modified":"2023-02-19T19:45:00","modified_gmt":"2023-02-19T19:45:00","slug":"un-periodico-aleman-rtl-habla-del-sindrome-de-duplicacion-mecp2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/el\/un-periodico-aleman-rtl-habla-del-sindrome-de-duplicacion-mecp2\/","title":{"rendered":"\u0388\u03bd\u03b1 \u03c0\u03b5\u03c1\u03b9\u03bf\u03b4\u03b9\u03ba\u03cc \u03c3\u03c4\u03bf \u0392\u03ad\u03bb\u03b3\u03b9\u03bf (RTL) \u03bc\u03b9\u03bb\u03ac\u03b5\u03b9 \u03b3\u03b9\u03b1 \u03c4\u03bf \u03c3\u03cd\u03bd\u03b4\u03c1\u03bf\u03bc\u03bf \u03b4\u03b9\u03c0\u03bb\u03b1\u03c3\u03b9\u03b1\u03c3\u03bc\u03bf\u03cd MeCP2"},"content":{"rendered":"

\u039f Matteo, \u03c6\u03bf\u03c1\u03ad\u03b1\u03c2 \u03c4\u03bf\u03c5 \u03c3\u03c5\u03bd\u03b4\u03c1\u03cc\u03bc\u03bf\u03c5 \u03b4\u03b9\u03c0\u03bb\u03b1\u03c3\u03b9\u03b1\u03c3\u03bc\u03bf\u03cd MECP2 \u03ba\u03b1\u03b9 \u03b7 \u03bf\u03b9\u03ba\u03bf\u03b3\u03ad\u03bd\u03b5\u03b9\u03ac \u03c4\u03bf\u03c5 \u03b1\u03bd\u03b1\u03c6\u03ad\u03c1\u03bf\u03c5\u03bd \u03c4\u03b7 \u03b4\u03b9\u03b1\u03b4\u03c1\u03bf\u03bc\u03ae \u03c4\u03bf\u03c5\u03c2 \u03c0\u03c1\u03bf\u03c2 \u03c4\u03b7 \u03b4\u03b9\u03ac\u03b3\u03bd\u03c9\u03c3\u03b7 \u03c3\u03b5 \u03ad\u03bd\u03b1 \u03c0\u03b5\u03c1\u03b9\u03bf\u03b4\u03b9\u03ba\u03cc \u03c4\u03bf\u03c5 \u0397\u03bd\u03c9\u03bc\u03ad\u03bd\u03bf\u03c5 \u0392\u03b1\u03c3\u03b9\u03bb\u03b5\u03af\u03bf\u03c5 (RTL).<\/p>\n\n

\u0395\u03b4\u03ce \u03b8\u03b1 \u03b2\u03c1\u03b5\u03af\u03c4\u03b5 \u03c4\u03b7 \u03bc\u03b5\u03c4\u03ac\u03c6\u03c1\u03b1\u03c3\u03b7 \u03c4\u03bf\u03c5 \u03ac\u03c1\u03b8\u03c1\u03bf\u03c5. \u039c\u03b5\u03c4\u03b1\u03c6\u03c1\u03ac\u03c3\u03c4\u03b7\u03ba\u03b5 \u03b1\u03c0\u03cc \u03c4\u03b1 \u03b3\u03b5\u03c1\u03bc\u03b1\u03bd\u03b9\u03ba\u03ac \u03b1\u03c0\u03cc \u03c4\u03b7\u03bd Karyn Lebescont. <\/p>\n\n

<\/p>\n\n

\u0397 \u03c3\u03c9\u03c3\u03c4\u03ae \u03b4\u03b9\u03ac\u03b3\u03bd\u03c9\u03c3\u03b7 \u03ba\u03b1\u03b8\u03c5\u03c3\u03c4\u03ad\u03c1\u03b7\u03c3\u03b5 \u03bc\u03b9\u03b1 \u03b1\u03b9\u03c9\u03bd\u03b9\u03cc\u03c4\u03b7\u03c4\u03b1. <\/p>\n\n

\"CASI PERDEMOS A MATTEO TRES VECES\": \u039f MATTEO (4 \u0395\u03a4\u038f\u039d) \u0388\u03a7\u0395\u0399 \u039c\u0399\u0391 \u03a3\u03a0\u0386\u039d\u0399\u0391 \u0393\u0395\u039d\u0395\u03a4\u0399\u039a\u0389 \u0391\u03a3\u0398\u0388\u039d\u0395\u0399\u0391<\/strong> <\/p>\n\n

\u0395\u03c0\u03b9\u03bc\u03ad\u03bb\u03b5\u03b9\u03b1: Julia Jaegler el 1 Junio 2022 <\/p>\n\n

\"\"
\u039f Matteo \u03ba\u03b1\u03b9 \u03b7 \u03bf\u03b9\u03ba\u03bf\u03b3\u03ad\u03bd\u03b5\u03b9\u03ac \u03c4\u03bf\u03c5 \u00a9 RTL <\/figcaption><\/figure>\n\n

\u039f \u03bc\u03b9\u03ba\u03c1\u03cc\u03c2 Matteo, \u03b1\u03c0\u03cc \u03c4\u03b7 \u0392\u03b9\u03ad\u03bd\u03b1, \u03b5\u03af\u03bd\u03b1\u03b9 \u03bc\u03cc\u03bb\u03b9\u03c2 \u03c4\u03c1\u03b9\u03ce\u03bd \u03b5\u03c4\u03ce\u03bd, \u03b1\u03bb\u03bb\u03ac \u03ad\u03c7\u03b5\u03b9 \u03c0\u03b5\u03c1\u03ac\u03c3\u03b5\u03b9 \u03b1\u03c0\u03cc \u03c0\u03bf\u03bb\u03bb\u03ac \u03bd\u03bf\u03c3\u03bf\u03ba\u03bf\u03bc\u03b5\u03af\u03b1 \u03ba\u03b1\u03b9 \u03b9\u03b1\u03c4\u03c1\u03b5\u03af\u03b1. \"El Contrajo todas estas infecciones y tuvimos que llevarlo al hospital cada dos semanas\", cuenta David C. a RTL. \"En sus dos primeros a\u00f1os de vida, casi perdemos a Matteo tres veces\". \u03a3\u03b5 \u03b5\u03ba\u03b5\u03af\u03bd\u03bf \u03c4\u03bf \u03c3\u03b7\u03bc\u03b5\u03af\u03bf, \u03bf \u00e9l \u03ba\u03b1\u03b9 \u03b7 \u03c3\u03cd\u03b6\u03c5\u03b3\u03cc\u03c2 \u03c4\u03bf\u03c5 Caroline \u03c3\u03c5\u03bd\u03b5\u03b9\u03b4\u03b7\u03c4\u03bf\u03c0\u03bf\u03af\u03b7\u03c3\u03b1\u03bd \u03cc\u03c4\u03b9 \u03ba\u03ac\u03c4\u03b9 \u03b4\u03b5\u03bd \u03c0\u03ae\u03b3\u03b1\u03b9\u03bd\u03b5 \u03ba\u03b1\u03bb\u03ac \u03bc\u03b5 \u03c4\u03bf\u03bd \u03b3\u03b9\u03bf \u03c4\u03bf\u03c5\u03c2. \u00bfPero qu\u00e9? <\/p>\n\n

\"Perdimos tanto tiempo hasta que por fin pudimos obtener el diagn\u00f3stico, fue horrible\". <\/strong><\/p>\n\n

\"\"
\u039f Matteo (4 \u03b5\u03c4\u03ce\u03bd) \u03c0\u03ac\u03c3\u03c7\u03b5\u03b9 \u03b1\u03c0\u03cc \u03bc\u03b9\u03b1 \u03c3\u03c0\u03ac\u03bd\u03b9\u03b1 \u03b3\u03b5\u03bd\u03b5\u03c4\u03b9\u03ba\u03ae \u03b4\u03b9\u03b1\u03c4\u03b1\u03c1\u03b1\u03c7\u03ae \u00a9 rtl.de<\/figcaption><\/figure>\n\n

Cuando Matteo naci\u00f3 en mayo de 2018, todo parec\u00eda ir bien, pero sus padres, ambos cient\u00edficos y qu\u00edmicos de la industria farmac\u00e9utica, no tardaron en sospechar. \"S\u00f3lo se ha retrasado un poco\", dicen los m\u00e9dicos, ya que Matteo no camin\u00f3 hasta los 28 meses. \u039f David \u03ba\u03b1\u03b9 \u03b7 Caroline C. \u03b4\u03b5\u03bd \u03c0\u03b9\u03c3\u03c4\u03b5\u03cd\u03bf\u03c5\u03bd \u03cc\u03c4\u03b9 \u03b5\u03af\u03bd\u03b1\u03b9 \u03b5\u03ba\u03b4\u03b9\u03ba\u03b7\u03c4\u03b9\u03ba\u03bf\u03af \u03ba\u03b1\u03b9 \u03b8\u03ad\u03bb\u03bf\u03c5\u03bd \u03bd\u03b1 \u03bc\u03ac\u03b8\u03bf\u03c5\u03bd \u03bf\u03b9 \u03af\u03b4\u03b9\u03bf\u03b9 \u03c4\u03b9 \u03c3\u03c5\u03bd\u03ad\u03b2\u03b7 \u03c3\u03c4\u03bf\u03bd \u03b3\u03b9\u03bf \u03c4\u03bf\u03c5\u03c2. Fue un camino largo y dif\u00edcil de m\u00e9dico en m\u00e9dico: \" Perdimos mucho tiempo antes de que por fin nos dieran un diagn\u00f3stico, fue terrible \", explica su padre para describir este periodo de incertidumbre. <\/p>\n\n

\"Matteo no lo entiende y no lo siente todo. S\u00f3lo puede decir unas pocas palabras\". <\/strong><\/p>\n\n

\"\"
\u039f \u03bc\u03b9\u03ba\u03c1\u03cc\u03c2 \u039c\u03b1\u03c4\u03ad\u03bf \u03c3\u03c4\u03bf \u03c3\u03c0\u03af\u03c4\u03b9 \u00a9 rtl.de <\/figcaption><\/figure>\n\n

Pero el diagn\u00f3stico tambi\u00e9n fue terrible: en agosto de 2021, tres a\u00f1os y medio despu\u00e9s del nacimiento de Matteo cay\u00f3 el veredicto: al peque\u00f1o que ahora tiene cuatro a\u00f1os le diagnosticaron un raro defecto gen\u00e9tico llamado s\u00edndrome de duplicaci\u00f3n MECP2 (MDS). \"S\u00f3lo se conocen unos 200 casos de esta enfermedad en el mundo, lo que lo hace a\u00fan m\u00e1s dif\u00edcil porque no se destina mucho dinero a la investigaci\u00f3n de enfermedades tan raras \", dice el padre de Matteo. \u039c\u03b9\u03b1 \u03b5\u03b3\u03ba\u03b5\u03c6\u03b1\u03bb\u03b9\u03ba\u03ae \u03c0\u03c1\u03c9\u03c4\u03b5\u0390\u03bd\u03b7, \u03b7 \u03bf\u03c0\u03bf\u03af\u03b1 \u03b5\u03bb\u03ad\u03b3\u03c7\u03b5\u03b9 \u03ac\u03bb\u03bb\u03b5\u03c2 \u03c0\u03c1\u03c9\u03c4\u03b5\u0390\u03bd\u03b5\u03c2, \u03b4\u03b9\u03c0\u03bb\u03b1\u03c3\u03b9\u03ac\u03b6\u03b5\u03c4\u03b1\u03b9 \u03c3\u03c4\u03bf\u03bd Matteo. \u0391\u03c5\u03c4\u03cc \u03ad\u03c7\u03b5\u03b9 \u03b1\u03bd\u03c4\u03af\u03ba\u03c4\u03c5\u03c0\u03bf \u03c3\u03c4\u03b7\u03bd \u03c0\u03bd\u03b5\u03c5\u03bc\u03b1\u03c4\u03b9\u03ba\u03ae \u03ba\u03b1\u03b9 \u03c3\u03c9\u03bc\u03b1\u03c4\u03b9\u03ba\u03ae \u03c4\u03bf\u03c5 \u03b1\u03bd\u03ac\u03c0\u03c4\u03c5\u03be\u03b7, \u03b5\u03be\u03b7\u03b3\u03b5\u03af \u03b7 \u03bc\u03b7\u03c4\u03ad\u03c1\u03b1 \u03c4\u03bf\u03c5 Caroline \u03c3\u03c7\u03b5\u03c4\u03b9\u03ba\u03ac \u03bc\u03b5 \u03c4\u03bf \u03b3\u03b5\u03bd\u03b5\u03c4\u03b9\u03ba\u03cc \u03b5\u03bb\u03ac\u03c4\u03c4\u03c9\u03bc\u03b1 \u03c4\u03bf\u03c5 \u03b3\u03b9\u03bf\u03c5 \u03c4\u03b7\u03c2: \"\u039f Matteo \u03b4\u03b5\u03bd \u03ba\u03b1\u03c4\u03b1\u03bb\u03b1\u03b2\u03b1\u03af\u03bd\u03b5\u03b9 \u03ae \u03b4\u03b5\u03bd \u03b1\u03b9\u03c3\u03b8\u03ac\u03bd\u03b5\u03c4\u03b1\u03b9 \u03c4\u03b1 \u03c0\u03ac\u03bd\u03c4\u03b1. \u039c\u03c0\u03bf\u03c1\u03b5\u03af \u03bd\u03b1 \u03c0\u03b5\u03b9 \u03bc\u03cc\u03bd\u03bf \u03bb\u03af\u03b3\u03b5\u03c2 \u03bb\u03ad\u03be\u03b5\u03b9\u03c2\". <\/p>\n\n

Los padres vivieron una aut\u00e9ntica odisea <\/strong><\/p>\n\n

\"\"
Matteo en un banco \u00a9 rtl.de <\/figcaption><\/figure>\n\n

\u03a9\u03c3\u03c4\u03cc\u03c3\u03bf, \u03c4\u03bf \u03c7\u03b5\u03b9\u03c1\u03cc\u03c4\u03b5\u03c1\u03bf \u03b3\u03b9\u03b1 \u03c4\u03bf\u03c5\u03c2 \u03c0\u03b1\u03c4\u03ad\u03c1\u03b5\u03c2 \u03c4\u03bf\u03c5\u03c2, \u03c0\u03bf\u03c5 \u03b6\u03bf\u03c5\u03bd \u03c3\u03c4\u03b7 \u0392\u03b9\u03ad\u03bd\u03bd\u03b7, \u03b5\u03af\u03bd\u03b1\u03b9 \u03b7 \u03c0\u03c1\u03cc\u03b3\u03bd\u03c9\u03c3\u03b7 \u03b3\u03b9\u03b1 \u03c4\u03bf \u03bc\u03ad\u03bb\u03bb\u03bf\u03bd \u03c4\u03bf\u03c5 \u03b3\u03b9\u03bf\u03c5 \u03c4\u03bf\u03c5\u03c2: \u03bf\u03b9 \u03c0\u03ac\u03c3\u03c7\u03bf\u03bd\u03c4\u03b5\u03c2 \u03b1\u03c0\u03cc 50% \u03b5\u03bc\u03c6\u03b1\u03bd\u03af\u03b6\u03bf\u03c5\u03bd \u03b5\u03c0\u03b9\u03bb\u03b7\u03c0\u03c4\u03b9\u03ba\u03ad\u03c2 \u03ba\u03c1\u03af\u03c3\u03b5\u03b9\u03c2 \u03bc\u03b5\u03c4\u03b1\u03be\u03cd \u03c4\u03bf\u03c5 \u03ad\u03b2\u03b4\u03bf\u03bc\u03bf\u03c5 \u03ba\u03b1\u03b9 \u03c4\u03bf\u03c5 \u03ad\u03bd\u03b1\u03c4\u03bf\u03c5 \u03b3\u03b5\u03bd\u03b5\u03b8\u03bb\u03af\u03bf\u03c5 \u03c4\u03bf\u03c5\u03c2- \u03bc\u03b5\u03c4\u03ac \u03b1\u03c0\u03cc \u03b1\u03c5\u03c4\u03cc, \u03bf\u03b9 \u03b9\u03ba\u03b1\u03bd\u03cc\u03c4\u03b7\u03c4\u03b5\u03c2 \u03c0\u03bf\u03c5 \u03ad\u03c7\u03bf\u03c5\u03bd \u03b1\u03c0\u03bf\u03ba\u03c4\u03ae\u03c3\u03b5\u03b9, \u03cc\u03c0\u03c9\u03c2 \u03c4\u03bf \u03c0\u03b5\u03c1\u03c0\u03ac\u03c4\u03b7\u03bc\u03b1, \u03c4\u03b5\u03af\u03bd\u03bf\u03c5\u03bd \u03bd\u03b1 \u03b5\u03c0\u03b9\u03b4\u03b5\u03b9\u03bd\u03ce\u03bd\u03bf\u03bd\u03c4\u03b1\u03b9 \u03c1\u03b1\u03b3\u03b4\u03b1\u03af\u03b1. \u039c\u03cc\u03bd\u03bf \u03c4\u03b1 \u03bc\u03b9\u03c3\u03ac \u03b1\u03c0\u03cc \u03c4\u03b1 \u03c0\u03ac\u03c3\u03c7\u03bf\u03bd\u03c4\u03b1 \u03c0\u03b1\u03b9\u03b4\u03b9\u03ac \u03b5\u03af\u03bd\u03b1\u03b9 \u03ac\u03bd\u03c9 \u03c4\u03c9\u03bd 25 \u03b5\u03c4\u03ce\u03bd. <\/p>\n\n

\"\u03a9\u03c2 \u03b5\u03c0\u03b9\u03c3\u03c4\u03ae\u03bc\u03bf\u03bd\u03b5\u03c2, \u03ba\u03b1\u03c4\u03b1\u03bd\u03bf\u03bf\u03cd\u03bc\u03b5 \u03ba\u03b1\u03bb\u03ac \u03c4\u03b9 \u03bc\u03b1\u03c2 \u03bb\u03ad\u03bd\u03b5 \u03bf\u03b9 \u03b3\u03b9\u03b1\u03c4\u03c1\u03bf\u03af. \u03a0\u03ce\u03c2 \u03b1\u03b9\u03c3\u03b8\u03ac\u03bd\u03bf\u03bd\u03c4\u03b1\u03b9 \u03cc\u03bc\u03c9\u03c2 \u03bf\u03b9 \u03ac\u03bb\u03bb\u03bf\u03b9 \u03b3\u03bf\u03bd\u03b5\u03af\u03c2 \u03cc\u03c4\u03b1\u03bd \u03b1\u03ba\u03bf\u03cd\u03bd\u03b5 \u03cc\u03bb\u03bf\u03c5\u03c2 \u03b1\u03c5\u03c4\u03bf\u03cd\u03c2 \u03c4\u03bf\u03c5\u03c2 \u03c0\u03b5\u03c1\u03af\u03c0\u03bb\u03bf\u03ba\u03bf\u03c5\u03c2 \u03c4\u03b5\u03c7\u03bd\u03b9\u03ba\u03bf\u03cd\u03c2 \u03cc\u03c1\u03bf\u03c5\u03c2 \u03c7\u03c9\u03c1\u03af\u03c2 \u03b5\u03be\u03b7\u03b3\u03ae\u03c3\u03b5\u03b9\u03c2; Los padres, ambos cient\u00edficos en puestos de responsabilidad, est\u00e1n familiarizados con el campo de la medicina. \u03a9\u03c3\u03c4\u03cc\u03c3\u03bf, \u03b3\u03b9' \u03b1\u03c5\u03c4\u03bf\u03cd\u03c2 \u03ae\u03c4\u03b1\u03bd \u03bc\u03b9\u03b1 \u03b1\u03c4\u03b5\u03bb\u03b5\u03af\u03c9\u03c4\u03b7 \u03bc\u03ac\u03c7\u03b7: \u03b1\u03c0\u03cc \u03b3\u03b9\u03b1\u03c4\u03c1\u03cc \u03c3\u03b5 \u03b3\u03b9\u03b1\u03c4\u03c1\u03cc, \u03b1\u03bd\u03c4\u03b9\u03bc\u03b5\u03c4\u03c9\u03c0\u03af\u03b6\u03bf\u03bd\u03c4\u03b1\u03c2 \u03b1\u03bc\u03b7\u03c7\u03b1\u03bd\u03af\u03b1 \u03ba\u03b1\u03b9 \u03b1\u03b4\u03b9\u03b1\u03c6\u03bf\u03c1\u03af\u03b1. <\/p>\n\n

Conseguir guarder\u00eda es un reto <\/strong><\/p>\n\n

En Instagram, la familia intenta a trav\u00e9s de la cuenta @matteo_mds llamar la atenci\u00f3n sobre esta enfermedad rara y tambi\u00e9n encontrar otras familias afectadas para compartir y apoyarse mutuamente. <\/p>\n\n

Matteo consigui\u00f3 una de las pocas plazas en guarder\u00edas para ni\u00f1os discapacitados de Viena. Puede ponerse de pie, andar, re\u00edr y decir algunas palabras, no tiene ataques epil\u00e9pticos y sus padres esperan que dure el mayor tiempo posible. <\/p>","protected":false},"excerpt":{"rendered":"

Matteo, portador del s\u00edndrome de duplicaci\u00f3n MECP2 y su familia hablan de su viaje hacia el diagn\u00f3stico en un peri\u00f3dico alem\u00e1n (RTL). Aqu\u00ed encontrar\u00e1 la traducci\u00f3n del art\u00edculo. Traducido del […]<\/p>","protected":false},"author":1,"featured_media":12836,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[115],"tags":[],"class_list":["post-15083","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-medios"],"yoast_head":"\nUn peri\u00f3dico alem\u00e1n (RTL) habla del s\u00edndrome de duplicaci\u00f3n MeCP2 - DupMECP2<\/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:\/\/dupmecp2.eu\/el\/un-periodico-aleman-rtl-habla-del-sindrome-de-duplicacion-mecp2\/?lang=es\" \/>\n<meta property=\"og:locale\" content=\"el_GR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Un peri\u00f3dico alem\u00e1n (RTL) habla del s\u00edndrome de duplicaci\u00f3n MeCP2 - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Matteo, portador del s\u00edndrome de duplicaci\u00f3n MECP2 y su familia hablan de su viaje hacia el diagn\u00f3stico en un peri\u00f3dico alem\u00e1n (RTL). 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