
Aceptar Duchenne no es rendirse - Ileen Colín | Sobrevivientes 5
Descripción del Episodio
Duchenne es la distrofia muscular más común en la primera infancia. Afecta a 1 de cada 3,500 niños, no tiene cura y durante años en México casi nadie la ha nombrado. Ilene lo descubrió cuando su hijo Carlo tenía ya un diagnóstico de autismo y todos los médicos atribuían sus dificultades motoras a eso.
00:00:00 - 00:05:57 La maternidad soñada
00:05:57 - 00:13:13 Del autismo a Duchenne
00:13:13 - 00:23:32 Esperanza en España
00:23:32 - 00:38:53 Duelo y red de apoyo
00:38:53 - 00:52:45 Ensayo y lucha en México
Vivían en Cancún. Mientras su hermano Leo empezaba a caminar, Carlo iba cada vez más lento. Pasó un año en terapia física sin que nadie detectara nada, hasta que otra terapeuta habló de distrofia muscular de Duchenne. Para el estudio genético tuvieron que viajar a Mérida y esperar mes y medio. Ilene ya sabía que la enfermedad era hereditaria. Cuando llegó la confirmación, ella y su esposo lloraron y a los diez segundos se miraron: ¿y Leo?
En internet leyó que Duchenne era mortal y que la esperanza de vida era de 15 a 20 años. Vio imágenes de niños en silla de ruedas y con respirador. El primer neurólogo que consultaron en México repitió "terrible enfermedad" y "no hay nada que hacer". En España, un doctor les habló por primera vez de esperanza, de investigación y de ensayos clínicos. Fueron a un congreso con cientos de papás informados, se mudaron en junio y buscaron un ensayo clínico. Al principio les dijeron que no aceptaban niños autistas. Los doctores buscaron la forma de incluir a Carlo y lo aceptaron.
Hoy Carlo lleva año y medio en un ensayo de salto de exón. Cada 15 días le sacan ocho tubos de sangre y le hacen pruebas motoras. En Duchenne, cada día cuenta: el tiempo es músculo. Detrás de esa lucha, Ilene también vivió insomnio, ataques de pánico y depresión. Aprendió que quienes accionan también necesitan ayuda.
Ahora trabaja para que las familias mexicanas no tengan que salir del país para atender a sus hijos. Capacita a médicos de primer contacto y pediatras para que no desestimen la sospecha clínica. En el mundo hay más de 30 ensayos clínicos para Duchenne. En México hay cero.
Conoce su historia completa en Sobrevivientes.
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