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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.
About the Authors
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.
Praise
for
The Power of Two
Isabel Stenzel Byrnes
and Anabel Stenzel"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
“This is an
excellent narrative that takes us through the twists and turns of
high-tech medicine and transplantation. Written with insight and
courage, this is a book to use with students of medical anthropology and
those interested in culture and healing.”—Elizabeth Strober,
Medical Anthropologist and Lecturer at Seattle University
“Isabel and
Anabel: twins with CF. Each author is unique, authentic. And each is a
mirror to the other, offering the reader intimate insight into life with
cystic fibrosis. These two women reveal their histories with candor and
compassion. They help us find strength within ourselves and from our
communities to rise above difficulty and breathe the freshness of each
new day. Those with chronic illness will find a voice in this book for
the daily challenges they themselves face and for the rich joys of life
that others may take for granted. I read this book in one sitting—and
now I revisit the pages to keep in touch with their compelling
story.”—Carroll Jenkins, Executive Director of Cystic Fibrosis Research,
Inc.
“One of the
hardest and earliest lessons we learn is that life isn’t fair. Perhaps
for that reason I don’t usually take to inspirational books, which often
attempt to portray a particular example of misfortune as a special gift,
to be appreciated for its character-building qualities, or failing that,
for an advantage so mysterious that no mere mortal can discern what it
might be. Fortunately, the genre is transcended by The Power of Two,
an astonishing account by twin sisters born with a genetic disease
that should have killed them in infancy, and almost did. But they
survived that and numerous other close calls and are now in their 30s,
with degrees from Stanford University, newly transplanted lungs, and a
gift for writing that takes us directly into their lives. This is an
intimate, brutally honest, and compelling memoir.”—Jeffrey Wine,
Professor of Psychology, Pediatrics, and Former Director of the Program
in Human Biology at Stanford University Cystic Fibrosis Research
Laboratory
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