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The Power of Two: A Twin Triumph Over Cystic Fibrosisby Isabel Stenzel Byrnes and Anabel Stenzel
Synopses & Reviews
For most people, a diagnosis of cystic fibrosis means the certainty of a life ended too soon. But for twin girls with the disease, what began as a family's stubborn determination grew into a miracle.
The tragedy of CF has been touchingly recounted in such books as Frank Deford's Alex: The Life of a Child, but The Power of Two is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their lifelong struggle to pursue normal lives with cystic fibrosis while grappling with the realization that they will die young. Their story reflects the physical and emotional challenges of a particularly aggressive form of CF and tells how the twins' bicultural heritage — Japanese and German — influenced the way they coped with these challenges.
Born in 1972, seventeen years before scientists discovered the genetic mutation that causes CF, Isabel and Anabel endured the daily regimen of chest percussion, frequent doctor visits, and lengthy hospitalizations. But they tell how, in the face of innumerable setbacks, their deep-seated dependence on each other allowed them to survive long enough to reap the benefits of the miraculous lung transplants that marked a crossroads in their lives: "We have an old life — one of growing up with chronic illness — and a new life — one of opportunities and gifts we have never imagined before." In this memoir, they pay tribute to the people who shaped their experience.
The Power of Two is an honest and gripping portrayal of day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. It conveys an important message to both popular and professional readers as it addresses key psychosocial issues in chronic illness throughout the sufferer's lifespan and illuminates the human side of advances in biotechnology.
Even as gene therapy and stem cell research increase the chances for eradicating CF, this stirring account portrays its effects on one family that refused to give up. These two remarkable sisters have much to teach about the power of perseverance — and about the ultimate power of hope.
"This miraculous story of twin sisters who grew up with cystic fibrosis is gripping and uplifting. It is a chronicle of the triumph of modern medicine, in terms both of heroic surgery and of the less glamorous, but ultimately more important tedium of daily chronic care. There are thousands upon thousands of Americans living with cystic fibrosis. This is mandatory reading for them and their families. It is a story about the power of hope and determination." Howard Dean, M.D., former Governor of Vermont and Chairman of the Democratic National Committee
"Isabel and Anabel's memoir of their extraordinary battle with cystic fibrosis is at once uplifting and frightening, touching and tough, but always powerful and filled with life and spirit, alike. It is a story that we all must be moved by, grateful that these two sisters shared their agony and love with us." Frank Deford, author of Alex: The Life of a Child
"This is an inspiring story of how twins Isa and Ana are thriving with cystic fibrosis and double lung transplants. The story shares how CF can be an aggressive and cruel disease, but with resilience, good family, and health care compliance, they are still able to lead very productive, active, and social professional lives. A book of hope and a must-read for any parent of a CF child or any person living with CF." Boomer Esiason, former NFL Quarterback Player, President of the Boomer Esiason Foundation, and parent of a CF child
"It is the unfortunate habit of books on illness and recovery to rely heavily on sanitized clichés. The downs are very down, the ups sky-high. This honest and carefully observed account avoids preconceived notions of the complicated path toward an organ transplant. Describing the stages of the affliction in detail, it makes you feel as if you were there, suffering a pain you had heard about but never really visualized, aware that death is no longer just a concept but could come at any time, and experiencing the complex emotions that come with being saved because someone else died. For readers who have not been close to a wasting disease, it will be an eye-opener, horrifying but in the end inspiring, a tale of courage being tested all day and every day." Reg Green, author of The Nicholas Effect: A Boy's Gift to the World
"Ana and Isa Stenzel were born against odds of 1.8 billion to one; identical twins of a Japanese mother and German father, with the crippling disease cystic fibrosis. Continuing against even greater odds, they succeeded in education and in living, and the long odds of listing for and receiving double lung transplants. These improbable events are, in fact, true and provide a fascinating and enlightening read. The beauty and the pain of the human condition continue to amaze us. This account is a winner in every respect." Bruce Reitz, M.D., Cardiothoracic Surgeon, and Norman E. Shumway Professor at Stanford University School of Medicine
"This is a great book for professionals in healthcare, biology, and biotech. I first met Ana and Isa when they were Stanford college students. They were two of the more than 900 cystic fibrosis patients who volunteered to participate in the clinical study that established the benefits of inhaled Pulmozyme. I have always taught doctors in training that our patients inspire us and that we learn so much when we really listen to them. Readers of this book will be inspired by their story. They will learn much about cystic fibrosis and about life. They will learn that it is not the number of days that we live that matters, it is what we do with every day that we are fortunate to have." Steven Shak, M.D., Chief Medical Officer at Genomic Health and Inventor of Pulmozyme
The tragedy of cystic fibrosis has been touchingly recounted before, but this is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their struggle to pursue normal lives while grappling with the realization that they will die young. Their story reflects the physical and emotional challenges of a particularly aggressive form of CF and tells how the twins’ bicultural heritage—Japanese and German—influenced the way they coped. The Power of Two is an honest and gripping portrayal of day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. These two remarkable sisters have much to teach about the power of perseverance—and about the ultimate power of hope.
About the Author
Isabel Stenzel Byrnes works as a community outreach coordinator, and Anabel Stenzel works as a genetic counselor in pediatric genetics, both at Lucile Packard Children's Hospital at Stanford in Palo Alto, California.
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