Overview

Drawing primarily on the experiences of those with cystic fibrosis (CF), it unites the voices of over 100 people across ten countries. This book contributes to unity across cultures and emphasizes the inherent human dignity of those with a chronic illness. While focusing on relationships and creating dialogue, The Roses Speak also advocates for continued medical research. The revolutionary gene modulator medication, Trikafta, has ameliorated the lives of many people with CF, yet comes at a cost of $25,000 per month, raising ethical questions of accessibility. Researchers hope that CF is the first of many currently incurable conditions that can be treated through gene modulators.

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9781565486492

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Reviews

""Inspiring, compelling and profound, this new book is a moving series of stories of hope and resilience."" James Martin, SJ, author of Learning to Pray ""As a nurse who has cared for many with cystic fibrosis, The Roses Speak provides a powerful and compassionate, heartfelt exploration of living with cystic fibrosis in the era of medical breakthroughs. Through honest interviews, the author not only highlights the medical advancements, capturing both the hope of those who benefit from new treatments and the pain of those left behind, but also shares the ups and downs throughout various experiences, including his own. The Roses Speak offers a compassionate look at a community navigating change, resilience, and disparity, while nurturing a safe space for reflection, understanding, and connection. From people with CF, to family, friends, and care team members, it's an essential read for anyone who wants to understand the true spectrum of life with CF today, promoting empathy and shared understanding in navigating life with chronic illness."" Rosa Mascola, BSN, RN Adult Cystic Fibrosis Nurse Coordinator, Yale Adult Cystic Fibrosis Program ""Many books have been written about living with CF but given profound changes from steady progress in therapies and culminating in drugs that treat the underlying cellular defect, the story has become much more complex as treatment has transformed lives. This compelling book reveals their depth through stories from the voices of people with CF whose lives reflect the broad spectrum that now exists. It is a unique and vitally important read for those living with CF, including families, friends and care providers, who wish to hear and more deeply understand those voices."" George Retsch-Bogart, MD Emeritus Professor, Division of Pediatric Pulmonology, University of North Carolina School of Medicine

Author Information

James Menkhaus, Ph.D., teaches theology at the collegiate and secondary level and completed residency in hospital chaplaincy. Living with cystic fibrosis has profoundly affected his role as an educator and chaplain. He has authored Immersion: A Pilgrimage into Service, as well as numerous peer-reviewed articles. He currently teaches religion at St. Xavier High School in Cincinnati, Ohio.

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