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Sobrevivencias by Javier Guerra, Gloria Pino-Ramírez

Sobrevivencias

by Javier Guerra , Gloria Pino-Ramírez
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Book cover type: Paperback
  • ISBN13: 9781291267419
  • Binding: Paperback
  • Subject: N/A
  • Publisher: Lulu.com
  • Publisher Imprint: Lulu.com
  • Publication Date:
  • Pages: 124
  • Original Price: GBP 5.01
  • Language: Spanish
  • Edition: N/A
  • Item Weight: 159 grams
  • BISAC Subject(s): General

Libro de vivencias sobre el síndrome 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 sinfonía 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 desafío de sacar lo mejor de sí.

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