¿Qué es el síndrome de Williams?
En el mes de agosto, la Cámara de Diputados de la Nación le dio media sanción a un proyecto de ley, que declara al mes de mayo, como mes del Síndrome de Williams
Susana Tiraboschi es miembro de la Asociación Argentina Síndrome de Williams, y contó que “el Síndrome de Williams es una condición genética, no es muy común, por eso esta englobado dentro de las enfermedades poco frecuentes. Las características son chicos, que tienen atrasos madurativos, entre leve y un poco más severo, según dicen los médicos, su desarrollo no es parejo. Son muy buenos en el lenguaje, son chicos que hablan bien, con frases bien armadas, son buenos para la música, tienen una gran facilidad para reconocer caras, son muy empáticos con la gente, saben lo que la gente siente, lo que a la gente le pasa, por eso son muy amigables con todo el mundo.”.
Agregó que el SW se “detecta por su fisonomía, tienen una carita particular, los médicos genetistas lo detectan, como no es común, uno no se da cuenta, la gente no se da cuenta. Hace unos años se empezó a implementar un examen genético, que se llama fish”.
Según las estadísticas mundiales, se da un caso de SW cada 7500, pero “nosotros solo tenemos contactadas en nuestro país a alrededor de 200 familias. Hay algunos que se han contactado, pero aclaradas sus dudas, no vuelven”.
En la ciudad de Buenos Aires, hace dos años que se declaró a la última semana de mayo, como la semana del SW y “ya hicimos una jornada, nos prestaron la Legislatura para hacerla, porque nuestra misión más importante es difundir para que más gente, sobre todo los profesionales, lo puedan detectar y las mismas familias” agregó Susana.
Para mayor información, se puede consultar la página de la Asociación Argentina Síndrome de Williams http://aasw.org.ar/
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