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ISBN10: 1291267417
ISBN13: 9781291267419
Publisher: Lulu Pr
Published: Dec 30 2012
Pages: 124
Weight: 0.35
Height: 0.26 Width: 5.83 Depth: 8.27
Language: Spanish
ISBN13: 9781291267419
Publisher: Lulu Pr
Published: Dec 30 2012
Pages: 124
Weight: 0.35
Height: 0.26 Width: 5.83 Depth: 8.27
Language: Spanish
Libro de vivencias sobre el sÃndrome de Marfan publicadas en el blog Mundo Marfan Latino http: //mundomarfan.org, que brinda un espejo en el que afectados y familiares puede mirarse, y aprender de la experiencia de los otros. Está divido en tres secciones: vivencias cotidianas, vivencias quirúrgicas y vivencias de los padres. El Marfan es una enfermedad rara y degenerativa del tejido conectivo relacionado con distintas partes del cuerpo. Afecta a 1 de cada 5.000 personas. Se caracteriza por un aumento inusual de la estatura y de la longitud de las extremidades. Algunas de sus consecuencias pueden ser: discapacidad visual, problemas musculo-esqueléticos crónicos severos, problemas respiratorios, y problemas en el corazón y la aorta potencialmente peligrosos para la vida de la persona afectada. El libro es una sinfonÃa tocada por muchas manos y dirigida desde el corazón por este reto que nos ha tocado vivir. Son historias de personas comunes cuyas vidas les han impuesto el desafÃo de sacar lo mejor de sÃ.
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