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Reclaman un centro nacional de referencia para el tratamiento de las enfermedades musculares infantiles

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Así lo ha asegurado el pediatra de este hospital madrileño y coordinador de las jornadas, Gustavo Lorenzo, quien reconoce que en este grupo de enfermedades se incluyen más de 500 trastornos distintos, entre distrofias musculares, miopatías congénitas o atrofias espinales, consideradas en su mayoría como enfermedades raras por su baja prevalencia.

La mayoría de estas patologías son crónicas y, salvo las que tienen una afectación leve, el resto “son bastante limitantes y presentan una evolución muy mala o agresiva”.

Por ello, Lorenzo reconoce que si todos los pacientes fuesen tratados en un mismo centro nacional se podrían compartir los avances investigadores que se van dando en las diferentes patologías y evaluar su posible ampliación a otros trastornos con menos expectativas de vida, al tiempo que se podría ofrecer un tratamiento multidisciplinar.

“Tanto en el diagnóstico como en el tratamiento, estas enfermedades deben abordarse por un gran número de especialistas, desde biólogos, genetistas, cardiólogos, neurofisiólogos, neumólogos o rehabilitadores”, asegura.

Además, se les ofrecería el apoyo psicológico que requieren estos pacientes que, según reconoce, “lo pasan mal” dadas las dificultades de movilidad que plantean muchas de estas enfermedades.

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