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Piel de Mariposa: Vivir cuando el cuerpo duele y el sistema falla
Paperback
General PsychologySelf-HelpSkin Diseases
Publisher: Independently Published
Published: Jan 25 2026
Pages: 152
Weight: 0.47
Height: 0.33 Width: 6.00 Depth: 9.00
Language: Spanish
PIEL DE MARIPOSA no es un libro más.
Es un grito sereno, una llamada urgente y una obra nacida de la realidad.
A partir de la historia real de un niño que pide ayuda, este libro explica qué es la piel de mariposa (Epidermólisis Bullosa) y qué significa vivir con un cuerpo frágil en un sistema que no siempre responde. Con un lenguaje claro y profundamente humano, recorre la enfermedad desde el dolor fÃsico cotidiano hasta la infancia, la adolescencia, la vida adulta y la responsabilidad colectiva.
No es un testimonio individual ni un manual médico. Es un recorrido completo por una realidad invisible para muchos y devastadora para quienes la viven. Un libro que denuncia la desigualdad en el acceso a medicamentos, la lentitud burocrática y la soledad a la que se enfrentan muchas familias.
El 100 % de los beneficios de esta obra se destinará Ãntegramente a la causa de la piel de mariposa, para apoyar tratamientos, investigación y mejorar la calidad de vida de quienes la padecen.
Leer este libro es comprender.
Compartirlo es acompañar.
Y apoyarlo es ayudar de forma real.
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