After Any Diagnosis: How To Take Action Against Your Illness Using The Best And Most Current Medical Information Available

Overview

Being diagnosed with an illness can be a time of worry, anxiety, and stress. Often, the immediate response is to gather as much information as you can about your or your loved one's illness. The reality is that the labyrinth of medical information now available in magazines, health journals, mainstream media, and on websites can be overwhelming and sometimes even unsettling if you don't understand how to use what you learn.

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2001 Trade paperback Illustrated. New 0609806696 Trade paperback (US). Glued binding. 320 p. Contains: Illustrations. Audience: General/trade.

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Overview

Being diagnosed with an illness can be a time of worry, anxiety, and stress. Often, the immediate response is to gather as much information as you can about your or your loved one's illness. The reality is that the labyrinth of medical information now available in magazines, health journals, mainstream media, and on websites can be overwhelming and sometimes even unsettling if you don't understand how to use what you learn.

After Any Diagnosis is the first book to help consumers create an information-gathering strategy -- one that will help patients and their families use their new knowledge effectively and responsibly. Based on interviews with top physicians across the country, patients' personal stories, and Carol Svec's extensive experience as a medical researcher and writer, After Any Diagnosis explains how to:

* Find the most up-to-date books, articles, and journals about a specific illness
* Know the difference between a good internet site and a misleading one
* Weigh the reliability and accuracy of information, including the results of medical studies
* Research doctors, caregivers, hospitals, and support groups -- and determine the value of second opinions
* Interpret confusing medical statistics

Many doctors will say that the most beneficial thing a patient can do to improve his or her health is to be well-informed. Let After Any Diagnosis give you the power and motivation to realize that goal.
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Editorial Reviews

From Barnes & Noble
Providing a blueprint for finding the best doctors, hospitals, and other caregivers, as well as rating various sources of medical information (the Internet, medical journals, and government agencies, for example), After Any Diagnosis is a one-stop sourcebook for clear, understandable advice about health care options.
Publishers Weekly
"Getting diagnosed with an illness," Svec writes, "is like hearing the starting pistol at the beginning of a race.... This book was written to help you run a better race." Even the best medical reference guide can't substitute for direct communication with a physician, but given changes in the medical system, especially insurance companies' limitations on doctor visits and treatments, patients need to be as proactive and informed as possible. That's why this book deserves a place on everyone's home reference shelf. Svec, a health researcher and freelance medical writer, offers practical advice on getting the best medical information. She critiques Web sites and the mass media, and explains how to find the most credible (usually university, nonprofit or government) sources, find and read journal articles on specific diseases, evaluate the reliability and accuracy of information and interpret statistics. Svec advises readers to set up their own tracking system: a large loose-leaf notebook filled with doctor and hospital records, a description of symptoms and a schedule of appointments. There are also sections on seeking second opinions and finding qualified caregivers. Overall, this is an excellent reference for anyone with a serious illness who is willing to do some homework to get better care. Agent, Jo Fagan/Jane Dystel Literary Management. (Aug.) Forecast: As Svec points out, more treatments are available than ever before but unfortunately, patients must work to learn about and get access to them. More and more people are coming around to this perspective, and this book is likely to be a lasting seller, especially if it's periodically updated. Copyright 2001 Cahners BusinessInformation.
Library Journal
This is an excellent resource for anyone who has been diagnosed with a chronic or acute life-threatening illness and wants to stay well informed. A freelance medical writer and health researcher, Svec provides some advice on communicating and partnering with physicians, but she devotes most of her book to explaining how to gather, evaluate, understand, and use current medical information. Her section on information sources uses a four-star system to rate the usefulness of medical texts, mass media, government health resources, the Internet, medical journals, and MEDLINE. A chapter on research studies and statistics provided in journal articles makes this often difficult-to-read information understandable and useful for patients. Required for any consumer health collection. Marge Kars, Bronson Methodist Hosp. Lib., Kalamazoo, MI Copyright 2001 Cahners Business Information.
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Product Details

  • ISBN-13: 9780609806692
  • Publisher: Crown Publishing Group
  • Publication date: 8/28/2001
  • Edition description: 1 ED
  • Pages: 320
  • Product dimensions: 5.22 (w) x 8.06 (h) x 0.74 (d)

Read an Excerpt

Introduction
Getting diagnosed with an illness is like hearing the starting pistol at the beginning of a race. Whether it’s a sprint or a marathon, a grueling endurance run or a jog through the park, the race is yours alone. No one can run it for you. And standing still is not an option–chances are the disease will progress if you don’t take steps to halt it.

This book was written to help you run a better race, no matter what your diagnosis is, how old you are, or how long you’ve been ill.

When it comes to health care, we all want pretty much the same things: caring and competent doctors, effective treatments, and quality of life. The good news is that these things are more available now than ever before. The bad news is that you’ll have to work to get them, but the results are well worth it.

The Good News
Despite the current fashion of portraying doctors as coldhearted, money-hungry medicine machines, the truth is that the vast majority of doctors care deeply about the welfare of their patients. They can recall in specific detail those patients who presented the greatest challenge, or who overcame great odds, or whose illness somehow taught them to be better doctors. They feel the decline and deaths of their patients personally, and they hate when disease “wins.” Even research doctors who never see patients because they spend their lives working in laboratories talk in idealistic terms of “finding a cure” or “making a contribution to humanity.”

Forget about making money as a reason for becoming a doctor. Medicine is no longer a guaranteed lucrative profession. Doctorstoday must contend with the financial costs of medical school and malpractice insurance, and the realities of working in a managed care environment. It’s been estimated that primary care physicians participating in managed care systems or HMOs need to see four patients per hour just to break even. This doesn’t even take into account the personal costs of being on-call or working night shifts in a hospital, and the spiritual costs of having to tussle with insurance companies over appropriate care and coverage.

So why do they do it? The latest survey conducted by the Association of American Medical Colleges found that nearly 90 percent of students applying to medical school cited “making a difference in people’s lives” as a very important reason for their career choice. “Prestige” and “high income” were far down the list, below “intellectual challenge” and “social responsibility.”

As for treatments, there are now more options than ever for diagnosing, treating, and managing most diseases. The past few decades have brought about a tremendous expansion of medical knowledge and technology. For example, through telemedicine, doctors can communicate with each other via the Internet and telecommunication technologies nearly instantaneously across the globe. This means that doctors and patients in remote locations can benefit from the advice and consultation of the world’s best specialists.

And many of the devices we take for granted today were mere science fiction just a generation or two ago. Ultrasound, now a part of routine prenatal care, wasn’t used for medical purposes until the 1950s; now-familiar CAT scans and MRIs were only developed in the 1970s; and as this book is being written, scientists at the Johns Hopkins University School of Medicine are conducting tests to see if a laser-powered microchip implanted in the retina of the eye might help some blind people regain a portion of their sight. So much progress has been made in preventing, diagnosing, and treating some types of cancer that the death rate from cancer has declined for the first time since the 1930s.

Quality of life is also more easily attainable these days. In the past several years, the medical community has been reevaluating the role of medications in pain control, placing more emphasis on relieving a patient’s discomfort than on the possibility of drug dependence or side effects. Doctors have also begun fostering partner relationships with their patients, as opposed to the traditional paternalistic model of treatment. Time and again, studies have shown that patients feel greater satisfaction and are more likely to comply with their treatment schedules when they are involved in their health care. Some studies have even shown that when patients are well-informed and participate in making medical decisions, their physical and psychological health improves. This information has not been lost on clinicians–dozens of medical schools in the United States currently have formalized doctor-patient communication programs, and more will undoubtedly follow.

The Bad News
I hate to be the one to break it to you, but the days of the all-knowing Marcus Welby—like family physician are over (if they ever actually existed). The most well-intentioned physician is constrained by managed care rules, which usually means seeing more patients for shorter amounts of time. According to a study published in 1999 by researchers from Harvard Medical School, Johns Hopkins University, and other institutions, the average office visit lasts approximately eighteen minutes. In that time the doctor needs to greet the patient, review the patient’s chart, talk about the reason for the current visit, conduct a physical examination, write notes in the chart, answer questions, and give medication or treatment instructions. That doesn’t leave much time for hand-holding or empathizing with the patient, and so doctors appear cold and uncaring.

Plus, we can no longer simply trust that our primary care physician will know the latest treatments. There is so much new information generated that no one doctor can keep track of it all. Every year more than 4,000 biomedical journals are published, and the FDA approves about 550 drugs for new or expanded use and about 3,700 new medical devices. State-of-the-art treatments may go untried simply because your doctor hasn’t had time to read about them yet. In a study published in the New England Journal of Medicine, one-in-four primary care physicians surveyed said they worried that the scope of care they were expected to provide was too large, and would be better handled by specialists. And yet the managed care system dictates that they continue to treat these more difficult cases. If doctors themselves don’t feel confident of their abilities, how can we be expected to entrust our health to them?

More devastating can be medical mistakes. Moving more and more patients through physicians’ offices in less and less time not only hurts the doctor-patient relationship, some experts say it compromises the quality of care and may increase the chance that a mistake will be made. According to a controversial 1999 report by the Institute of Medicine, between 44,000 and 98,000 deaths are caused by medical mistakes each year, prompting hospitals, organizations, and government committees to look for ways to reduce the errors. Until then, patients need to find out how they can protect themselves.

One small personal example: I was advised to have a contrast CAT scan to determine the cause of some recurring abdominal pain. When asked directly, my doctor and the CAT technician told me the procedure was perfectly safe. But being the obsessive health researcher that I am, I took one additional and very simple step that proved to be critical. I looked up “CAT scan” in a book of medical procedures. There was a warning in bold type saying that CAT contrast dyes contain iodine, which can cause a serious reaction in people who are allergic to shellfish. Guess what I’m allergic to! My doctor hadn’t warned me, and the CAT technician only asked if I had an allergy to medications. If I hadn’t bothered to check up on the procedure, a simple twenty-minute test could have landed me in the hospital . . . or even, depending on the severity of my allergic reaction, taken my life.

The lesson is this: If you want the best medical care . . . if you want to be able to take advantage of all the high-tech advances available . . . if you want a better chance of understanding and managing your disease, then you need to become more actively involved in your health care.

Think back to the last time you purchased a car. You probably did several things to make sure you made the best possible decision. You may have asked your friends how they liked their cars, looked in automotive or consumer magazines for the latest ratings, read newspaper articles, went to the showroom to test-drive the model you wanted, looked at other cars for comparison, and hunted around for the lowest price. We need to make at least that much of an effort when pursuing something even more precious–our health.

Why Read This Book
William C. Dooley, M.D., a surgical oncologist at Johns Hopkins Hospital and director of the Johns Hopkins Breast Center, once told me that the first thing he tells his newly diagnosed patients is to go out and gather as much information about their disease as they possibly can. After a pause, he sighed and said, “Unfortunately, very few people know how to do that.”

This book was written to help you learn how to gather, understand, and use medical information. It is based on published research, interviews with top physicians and experts from across the country, patients’ personal stories, and my own professional experience. As a health writer and researcher, I need to locate and digest information on a wide variety of medical topics quickly. The information has to be current and accurate, otherwise I’m out of a job. If you are dealing with an illness, the stakes are much higher for you. This book will guide you through the process of becoming a more active patient and, it is hoped, a healthier person.

Since everyone’s needs are different, this book was designed to allow you to pick and choose the sections you want to focus on, in any order. I recommend that you read Section One, “Getting It Right from the Beginning,” in its entirety first. It describes why learning more about your disease and doctor-patient partnering are important to your health, the type of information you need, how to start an information search, and how to organize the information you find.

Section Two, “Information Sources,” talks about various information sources and how to use them to your best advantage: How accurate is the health information in books, newsletters, and newspaper articles? Where is the best information on the Internet? How can you tell the difference between a “good” source and one that may be misleading or wrong? How can you access and start to understand the same sources of medical information your doctor uses? The sources are rated for accessibility and usefulness, and a summary is included at the end of each chapter for easy reference.

Section Three, “Caregivers,” discusses how to find the best medical care by researching doctors, hospitals, other caregivers, and support groups: How can you find the best doctor for you? Are some hospitals better than others? What other health specialists should you tap for information? Are all support groups the same?

Section Four, “Putting It All Together,” describes how to use the information you’ve gathered, including a brief and painless (I hope) chapter on statistics to help you understand some of the numbers you read, and a chapter on the nuts and bolts of making a medical decision.

This book is not intended to help you diagnose an illness–no book can do that. Nor does this book advocate alternative treatments over standard medicine. The information-gathering skills that are covered here are designed to help you become a better health partner with your doctor so that the two of you, together, can treat and manage your illness. Physicians, medical technology, and scientific methods still offer the best options for cure, recovery, and life extension.

Treat this book as you would a cookbook, as a basic set of instructions that can be adapted to include your own innovations and style as you become more comfortable with information gathering. Once you have the skills, you’ll develop your own shortcuts and favorite resources to which you can return as you manage your illness throughout the years.

Like all families, mine has been hit by quite a few illnesses over the years, some serious, some not so serious. Time and time again, my familiarity with research has allowed me to interpret medical information for people I love. What I’ve discovered is that different people use the information in different ways. Some use it as a way to understand and gain control over their fears and anxiety. Others use it as a tool to seek out the best care. Still others use large quantities of information to guide their decision making. Since everyone is different, all these responses are “right” for the particular individual involved.

A few years ago, my youngest sister was diagnosed with a brain tumor the size of an orange. I’ve never had such an electric jolt of fear as when I heard her tell me those words over the telephone. I spent the next twenty-four hours straight finding all the information I could about her type of tumor (a meningioma) and calling other family members to tell them what I had been able to learn. Because the tumor was benign, the information was generally a comfort. But because of the large size of the tumor, the surgery would be tricky. We found out there was a chance of paralysis, brain damage, and loss of memory. Over the next couple of weeks, as she prepared for surgery, more research told us that her doctor was among the best in the country, that the hospital had state-of-the-art technology for brain surgery, and what to expect during recovery. Although we couldn’t take away the reality of the disease, we could understand it and prepare for all potential outcomes. Fortunately, my sister was treated well, and the biggest remnant of the ordeal is a four-inch-square scar that shows where titanium plates hold the pieces of her skull together. (I think it is a tribute to her resilience that she likes to show it off at parties!)

With each diagnosis–from my sister’s brain tumor to my brother-in-law’s avascular necrosis and hip replacement to a friend’s thyroid cancer and other illnesses of friends and family–I’ve been fortunate enough to be able to help by providing information and talking them (and their families) through the treatment and healing process. It is my sincere wish that this book accomplish the same for you by providing a place to start in understanding and managing your illness.


Copyright 2001 by Carol Svec
Read More Show Less

Introduction

Getting diagnosed with an illness is like hearing the starting pistol at the beginning of a race. Whether it's a sprint or a marathon, a grueling endurance run or a jog through the park, the race is yours alone. No one can run it for you. And standing still is not an option -- chances are the disease will progress if you don't take steps to halt it.

This book was written to help you run a better race, no matter what your diagnosis is, how old you are, or how long you've been ill.

When it comes to health care, we all want pretty much the same things: caring and competent doctors, effective treatments, and quality of life. The good news is that these things are more available now than ever before. The bad news is that you'll have to work to get them, but the results are well worth it.

The Good News

Despite the current fashion of portraying doctors as coldhearted, money-hungry medicine machines, the truth is that the vast majority of doctors care deeply about the welfare of their patients. They can recall in specific detail those patients who presented the greatest challenge, or who overcame great odds, or whose illness somehow taught them to be better doctors. They feel the decline and deaths of their patients personally, and they hate when disease "wins." Even research doctors who never see patients because they spend their lives working in laboratories talk in idealistic terms of "finding a cure" or "making a contribution to humanity."

Forget about making money as a reason for becoming a doctor. Medicine is no longer a guaranteed lucrative profession. Doctors today must contend with the financial costs of medical school and malpractice insurance, and the realities of working in a managed care environment. It's been estimated that primary care physicians participating in managed care systems or HMOs need to see four patients per hour just to break even. This doesn't even take into account the personal costs of being on-call or working night shifts in a hospital, and the spiritual costs of having to tussle with insurance companies over appropriate care and coverage.

So why do they do it? The latest survey conducted by the Association of American Medical Colleges found that nearly 90 percent of students applying to medical school cited "making a difference in people's lives" as a very important reason for their career choice. "Prestige" and "high income" were far down the list, below "intellectual challenge" and "social responsibility."

As for treatments, there are now more options than ever for diagnosing, treating, and managing most diseases. The past few decades have brought about a tremendous expansion of medical knowledge and technology. For example, through telemedicine, doctors can communicate with each other via the Internet and telecommunication technologies nearly instantaneously across the globe. This means that doctors and patients in remote locations can benefit from the advice and consultation of the world's best specialists.

And many of the devices we take for granted today were mere science fiction just a generation or two ago. Ultrasound, now a part of routine prenatal care, wasn't used for medical purposes until the 1950s; now-familiar CAT scans and MRIs were only developed in the 1970s; and as this book is being written, scientists at the Johns Hopkins University School of Medicine are conducting tests to see if a laser-powered microchip implanted in the retina of the eye might help some blind people regain a portion of their sight. So much progress has been made in preventing, diagnosing, and treating some types of cancer that the death rate from cancer has declined for the first time since the 1930s.

Quality of life is also more easily attainable these days. In the past several years, the medical community has been reevaluating the role of medications in pain control, placing more emphasis on relieving a patient's discomfort than on the possibility of drug dependence or side effects. Doctors have also begun fostering partner relationships with their patients, as opposed to the traditional paternalistic model of treatment. Time and again, studies have shown that patients feel greater satisfaction and are more likely to comply with their treatment schedules when they are involved in their health care. Some studies have even shown that when patients are well-informed and participate in making medical decisions, their physical and psychological health improves. This information has not been lost on clinicians -- dozens of medical schools in the United States currently have formalized doctor-patient communication programs, and more will undoubtedly follow.

The Bad News

I hate to be the one to break it to you, but the days of the all-knowing Marcus Welby-like family physician are over (if they ever actually existed). The most well-intentioned physician is constrained by managed care rules, which usually means seeing more patients for shorter amounts of time. According to a study published in 1999 by researchers from Harvard Medical School, Johns Hopkins University, and other institutions, the average office visit lasts approximately eighteen minutes. In that time the doctor needs to greet the patient, review the patient's chart, talk about the reason for the current visit, conduct a physical examination, write notes in the chart, answer questions, and give medication or treatment instructions. That doesn't leave much time for hand-holding or empathizing with the patient, and so doctors appear cold and uncaring.

Plus, we can no longer simply trust that our primary care physician will know the latest treatments. There is so much new information generated that no one doctor can keep track of it all. Every year more than 4,000 biomedical journals are published, and the FDA approves about 550 drugs for new or expanded use and about 3,700 new medical devices. State-of-the-art treatments may go untried simply because your doctor hasn't had time to read about them yet. In a study published in the New England Journal of Medicine, one-in-four primary care physicians surveyed said they worried that the scope of care they were expected to provide was too large, and would be better handled by specialists. And yet the managed care system dictates that they continue to treat these more difficult cases. If doctors themselves don't feel confident of their abilities, how can we be expected to entrust our health to them?

More devastating can be medical mistakes. Moving more and more patients through physicians' offices in less and less time not only hurts the doctor-patient relationship, some experts say it compromises the quality of care and may increase the chance that a mistake will be made. According to a controversial 1999 report by the Institute of Medicine, between 44,000 and 98,000 deaths are caused by medical mistakes each year, prompting hospitals, organizations, and government committees to look for ways to reduce the errors. Until then, patients need to find out how they can protect themselves.

One small personal example: I was advised to have a contrast CAT scan to determine the cause of some recurring abdominal pain. When asked directly, my doctor and the CAT technician told me the procedure was perfectly safe. But being the obsessive health researcher that I am, I took one additional and very simple step that proved to be critical. I looked up "CAT scan" in a book of medical procedures. There was a warning in bold type saying that CAT contrast dyes contain iodine, which can cause a serious reaction in people who are allergic to shellfish. Guess what I'm allergic to! My doctor hadn't warned me, and the CAT technician only asked if I had an allergy to medications. If I hadn't bothered to check up on the procedure, a simple twenty-minute test could have landed me in the hospital…or even, depending on the severity of my allergic reaction, taken my life.

The lesson is this: If you want the best medical care…if you want to be able to take advantage of all the high-tech advances available…if you want a better chance of understanding and managing your disease, then you need to become more actively involved in your health care.

Think back to the last time you purchased a car. You probably did several things to make sure you made the best possible decision. You may have asked your friends how they liked their cars, looked in automotive or consumer magazines for the latest ratings, read newspaper articles, went to the showroom to test-drive the model you wanted, looked at other cars for comparison, and hunted around for the lowest price. We need to make at least that much of an effort when pursuing something even more precious -- our health.

Why Read This Book

William C. Dooley, M.D., a surgical oncologist at Johns Hopkins Hospital and director of the Johns Hopkins Breast Center, once told me that the first thing he tells his newly diagnosed patients is to go out and gather as much information about their disease as they possibly can. After a pause, he sighed and said, "Unfortunately, very few people know how to do that."

This book was written to help you learn how to gather, understand, and use medical information. It is based on published research, interviews with top physicians and experts from across the country, patients' personal stories, and my own professional experience. As a health writer and researcher, I need to locate and digest information on a wide variety of medical topics quickly. The information has to be current and accurate, otherwise I'm out of a job. If you are dealing with an illness, the stakes are much higher for you. This book will guide you through the process of becoming a more active patient and, it is hoped, a healthier person.

Since everyone's needs are different, this book was designed to allow you to pick and choose the sections you want to focus on, in any order. I recommend that you read Section One, "Getting It Right from the Beginning," in its entirety first. It describes why learning more about your disease and doctor-patient partnering are important to your health, the type of information you need, how to start an information search, and how to organize the information you find.

Section Two, "Information Sources," talks about various information sources and how to use them to your best advantage: How accurate is the health information in books, newsletters, and newspaper articles? Where is the best information on the Internet? How can you tell the difference between a "good" source and one that may be misleading or wrong? How can you access and start to understand the same sources of medical information your doctor uses? The sources are rated for accessibility and usefulness, and a summary is included at the end of each chapter for easy reference.

Section Three, "Caregivers," discusses how to find the best medical care by researching doctors, hospitals, other caregivers, and support groups: How can you find the best doctor for you? Are some hospitals better than others? What other health specialists should you tap for information? Are all support groups the same?

Section Four, "Putting It All Together," describes how to use the information you've gathered, including a brief and painless (I hope) chapter on statistics to help you understand some of the numbers you read, and a chapter on the nuts and bolts of making a medical decision.

This book is not intended to help you diagnose an illness -- no book can do that. Nor does this book advocate alternative treatments over standard medicine. The information-gathering skills that are covered here are designed to help you become a better health partner with your doctor so that the two of you, together, can treat and manage your illness. Physicians, medical technology, and scientific methods still offer the best options for cure, recovery, and life extension.

Treat this book as you would a cookbook, as a basic set of instructions that can be adapted to include your own innovations and style as you become more comfortable with information gathering. Once you have the skills, you'll develop your own shortcuts and favorite resources to which you can return as you manage your illness throughout the years.

Like all families, mine has been hit by quite a few illnesses over the years, some serious, some not so serious. Time and time again, my familiarity with research has allowed me to interpret medical information for people I love. What I've discovered is that different people use the information in different ways. Some use it as a way to understand and gain control over their fears and anxiety. Others use it as a tool to seek out the best care. Still others use large quantities of information to guide their decision making. Since everyone is different, all these responses are "right" for the particular individual involved.

A few years ago, my youngest sister was diagnosed with a brain tumor the size of an orange. I've never had such an electric jolt of fear as when I heard her tell me those words over the telephone. I spent the next twenty-four hours straight finding all the information I could about her type of tumor (a meningioma) and calling other family members to tell them what I had been able to learn. Because the tumor was benign, the information was generally a comfort. But because of the large size of the tumor, the surgery would be tricky. We found out there was a chance of paralysis, brain damage, and loss of memory. Over the next couple of weeks, as she prepared for surgery, more research told us that her doctor was among the best in the country, that the hospital had state-of-the-art technology for brain surgery, and what to expect during recovery. Although we couldn't take away the reality of the disease, we could understand it and prepare for all potential outcomes. Fortunately, my sister was treated well, and the biggest remnant of the ordeal is a four-inch-square scar that shows where titanium plates hold the pieces of her skull together. (I think it is a tribute to her resilience that she likes to show it off at parties!)

With each diagnosis -- from my sister's brain tumor to my brother-in-law's avascular necrosis and hip replacement to a friend's thyroid cancer and other illnesses of friends and family -- I've been fortunate enough to be able to help by providing information and talking them (and their families) through the treatment and healing process. It is my sincere wish that this book accomplish the same for you by providing a place to start in understanding and managing your illness.

Copyright ©(2001) by Carol Svec.

Read More Show Less

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