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March 10, 1999
1 in 1,000 Babies Born Annually with
Life-threatening Disease
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SEBASTOPOL, CA -- For every 1,000 babies born in the United States every
year, there's one who is born with life-threatening hydrocephalus. For that
one, simply getting through each day can be overwhelming. This condition
can mean a lifetime of confusion, forgetfulness, loss of vision, headaches,
nausea, chronic seizures or problems with motor skills. Hydrocephalus: A
Guide for Patients, Families, and Friends by Chuck Toporek and Kellie
Robinson is a rich resource for those living with, or caring for someone,
with this condition.
The word hydrocephalus is derived from the Greek; hydro means water and
cephalus means head. Often referred to as "water on the brain", it is
generally treated with surgical placement of a shunt system that drains
excess fluid around the brain. Although the majority of cases are
congenital, hydrocephalus can also be caused by a brain tumor, trauma to
the head or by infections such as meningitis later in life.
"Kellie and I wrote this book with the hope that it will help answer all
the unanswered questions that families face and provide hope for those who
live with hydrocephalus," describes author Chuck Toporek.
With a diagnosis of hydrocephalus, many people feel their lives have spun
out of control. This book provides individuals and families with the
guidance, information and support needed to make the right decisions at the
right times. It also contains stories from patients
-- "medical frequent fliers" -- who share, in their own words, the lessons
and strategies they have learned in their medical journeys.
"I found [this book] to be most informative. Something like this is
desperately needed for families," comments Dr. Marian Walker, Professor and
Chairman of Pediatric Neurosurgery Division, University of Utah Primary
Children's Medical Center.
This is the only book on hydrocephalus specifically for families who are
experiencing information pain. Those who read this book will encounter
medical facts clearly explained, advice to ease their daily life, and tools
for patient advocacy.
About the Authors
Kellie Robinson, who was diagnosed with hydrocephalus as a child in 1971,
is a freelance writer and has worked in broadcasting. Kellie also writes a
column for adults with hydrocephalus for the Hydrocephalus Association's
quarterly newsletter. Chuck Toporek has worked as an editor in medical and
scientific publishing since 1988 and is currently the managing editor of
Web Review magazine. Together, the authors combined their skills and
personal experiences to research and write the first guide for patients
with hydrocephalus. Chuck and Kellie are married and live in Santa Rosa,
California with their cat Max.
Hydrocephalus: A Guide
for Patients, Families & Friends
by Chuck Toporek & Kellie Robinson
$19.95, 362 pages, paperback
ISBN: 1-56592-410-X
PUBLICATION DATE: February 1999
About Patient-Centered Guides
Patient-Centered Guides offer good, solid, thorough information to people
and their families facing the challenges of life-threatening or
life-changing diseases and conditions. Each book provides a mix of medical
background to help in making treatment decisions, practical information,
and emotional support. With stories of people who have been there woven
throughout, the books let the patients themselves decide which issues are
important. Hydrocephalus is the latest title in the Patient-Centered Guide
series. Others include:
Patient-Centered Guides is a division of O'Reilly & Associates, Inc.
O'Reilly is recognized worldwide for its definitive technical books on the
Internet, programming, and UNIX, and in the U.S. for its award-winning
Travelers' Tales series of travel literature.
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