Author: Mary J. Shomon
ISBN number: 0060938196
List price: $14.95 (US dollars)
Published by: HarperCollins, HarperResource
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"Mary Shomon is more knowledgeable and has provided patients with more timely and comprehensive information about these conditions than most physicians..."
~ Marie Savard, MD, author of How to Save Your Own Life and The Savard Health Record
"...those with autoimmune illnesses are being shortchanged by the medical establishment. Since those who suffer from one are more vulnerable to other autoimmune disorders (not to mention that they may have a genetic predisposition toward a disorder), this informative self-help manual is badly needed. Drawing on extensive research, as well as doctor-patient anecdotes, Shomon's guide is designed to empower patients to participate in their own care..."
~ Publisher's Weekly
"Patients who are struggling to get diagnosed with or understand their autoimmune conditions will find Mary Shomon's book an extremely useful, essential resource..."
~ Stephen E. Langer, MD, author of Solved: The Riddle of Illness, and Solved: The Riddle of Weight Loss
"Mary Shomon is a leader in understanding the information patients need when it comes to autoimmune and thyroid disorders...her books should be required reading..."
~ Larrian Gillespie, MD, author of You Don't Have to Live with Cystitis, The Goddess Diet, The Menopause Diet, and The Gladiator Diet
"...helps people make sense of multiple mystifying symptoms...offers a road map to proper diagnosis...a brilliant empowerment manual..."
~ Richard Shames, MD and Karilee Shames, PhD, RN, HNC, authors of Thyroid Power
"The truth, the whole truth, and nothing but the truth about autoimmune diseases from Mary Shomon, the woman who taught America about thyroid disease! Her book will enlighten you about how to diagnose, treat and possibly even prevent, autoimmune disease..."
~ Carol Roberts, MD, Director, Wellness Works holistic health center, and radio host, WMNF-FM, Tampa Bay, FL
"...a much needed book [that] gives hope to those who suffer from chronic illnesses....I would highly recommend this book to my patients."
~ David Brownstein, MD, author of The Miracle of Natural Hormones, and Overcoming Arthritis
The following excerpt is from Mary Shomon's bestselling book, "Living Well With Hypothyroidism," a bestseller published by Harper Collins:
"When I was first diagnosed with hypothyroidism, I didn't have any idea what or where the thyroid was, or what it actually did. My doctor phoned to let me know that my thyroid was a little underactive, called in a prescription to the pharmacy, and that was the extent of the diagnosis and treatment. Months after I began thyroid hormone replacement, I was still struggling with continuing symptoms. My hair was falling out and clogging the drains. I was waking up each morning with sore and achy joints and muscles. Just a few hours of typing on the computer would set off a major attack of carpal tunnel syndrome in my forearms and wrists. My eyes became scratchy and vision blurry due to dryness. My hands and feet frequently tingled and went numb.
I decided to find out more about my condition, and read a book from the 1970s that explained that the main cause of hypothyroidism was actually an autoimmune disease, Hashimoto's thyroiditis. The book offered little insight into how someone would get this condition, or whether there was anything you could do about it. All it suggested was that having one autoimmune disease could increase the risk of developing other autoimmune conditions. The prospect of having one poorly understood autoimmune condition was frightening - but made far worse by the idea that I was also at higher risk for lupus, multiple sclerosis, diabetes, or worse.
I asked my doctor to refer me to an endocrinologist - a specialist in endocrine diseases. When I consulted with the endocrinologist, I asked her if I could be tested for Hashimoto's thyroiditis.
"We could do that," she responded, "but what's the point of spending the money? Because it's not like the fact that your hypothyroidism is caused by an autoimmune disease is going to change anything. . . "
But the truth is, my hypothyroidism was ultimately caused by an autoimmune disease - Hashimoto's thyroiditis. And that does change everything.
In reality, it changes the way I should eat. The symptoms I should more closely monitor. The vitamins, minerals, herbs and supplements I should take. The type of doctors I should visit. The way I should manage stress. Even the water I should drink. And it changes the way I should feed my young daughter and care for her health now to protect her health in the future.
That's why I wrote Living Well With Autoimmune Disease. Because autoimmune disease does matter...and because we need to know more. Variations of my story are repeated every day, when a patient with autoimmune thyroid disease wonders, as I did, if the tingling and numbness are actually signs of impending multiple sclerosis. Or when the woman with lupus asks how she got the condition, and is offered nothing more than a shrug of the shoulders from a doctor. Or when a person with Sjögren's syndrome worries that the dry eyes and dry mouth are a harbinger of other autoimmune diseases to come, but is told there's nothing that can be done to prevent it, so why worry. Or when a pregnant woman wonders whether her new baby is at greater risk of developing an autoimmune disease someday.
But for most autoimmune diseases, the best that medicine can do is keep some symptoms at bay. The root cause of the condition, or any potential to cure the autoimmune disease, is rarely -- if at all -- addressed.
And that means that you may ultimately feel afraid.
Afraid, because once the immune system has "turned on you," you may start on a seemingly downward health spiral, characterized by development of other autoimmune conditions.
Afraid because multiple autoimmune conditions are frequently accompanied by dramatically worsening allergies, heightened chemical sensitivities, hormonal imbalances, and a host of other debilitating and life-changing symptoms.
Afraid because you've perhaps only just learned to deal with your diagnosed condition, only to suspect that every new symptom, every new ache, or pain, might signal the onset of another new and insidious autoimmune disease.
Afraid because, for the most part, doctors throw up their hands when you ask: "What can I do about my autoimmune condition?" And afraid because your doctors just shake their heads, perplexed, when you ask, "How can I avoid getting more autoimmune-related diseases?" And afraid because most doctors don't have an answer to the critical question: "Is there anything we can to help my children avoid following in my footsteps, and prevent them from developing autoimmune diseases in the future?"
Afraid because, over time, chronic malfunctioning of the immune system can also ultimately lead to dangerous cancers.
Afraid that there's no way to recapture your health, no way to slow or halt the inexorable march of an immune system gone haywire as it launches each new attack on another part of your body.
Afraid that there are no answers.
But there are answers.
You just aren't likely to hear them from the typical HMO doctor, who may not even recognize or easily diagnose many autoimmune conditions, much less know how to treat them -- particularly given the constraints of the typical HMO-mandated "15-minutes or less" appointment.
And the answers aren't likely to be forthcoming from the average primary care doctor, or GP, or ob-gyn -- the doctors most of us see for our day-to-day medical care. These doctors rush through dozens of patients a day, and barely have time to stay up on key developments in the most studied conditions like heart disease or cancer, much less time to delve into complicated and little understood autoimmune diseases.
And even those doctors who consider themselves "experts" in treating the most common autoimmune diseases rarely venture into the uncharted territory of actually dealing with the autoimmune process itself. Most are content to focus on treating symptoms.
So endocrinologists give insulin for diabetes, and thyroid hormone replacement for thyroid disease. Rheumatologists prescribe pain relievers and immunosuppressives for rheumatoid arthritis. Gastroenterologists offer surgeries and drugs for Crohn's disease. But ask these doctors about the autoimmune implications of the conditions, and you'll usually draw a blank.
The term "autoimmune disease" and the concept of autoimmunity weren't even articulated or understood until the late 1950s. And while autoimmune disease has been studied by experts and researchers since that time, how and why we develop autoimmune diseases is not something that seems to have been widely embraced by popular medicine. It's rare that you'd open your newspaper to find regular reports of the latest research findings on risks and causes of autoimmune disease. You won't find pamphlets in your doctor's office talking about how to avoid developing an autoimmune condition. There isn't even such a thing as an "autoimmunologist," a specialist who has a big picture ability to diagnose and treat autoimmune diseases in general.
This is in sharp contrast to cancer, for example. When it comes to cancer, every day new information is released about risk factors and lifestyle issues. We know that smoking can cause lung cancer, that obesity and a high-fat diet may contribute to the risk of developing breast cancer, that excessive sunbathing causes skin cancer. If you've had cancer, there are a variety of recommendations regarding diet, exercise, supplements and lifestyle, to prevent recurrence. And there are cancer hospitals, specialists, nutritionists, holistic experts, alternative clinics, and many other cancer-focused experts and resources. When you fill out a medical history form, they ask about family history of cancer.
Why don't we have the same approach for autoimmune disease? Some people would say it's because autoimmune diseases aren't that common. But they would be wrong. The American Autoimmune Related Diseases Association (AARDA), the only national organization dedicated to looking at autoimmune diseases as an entity, states that approximately 50 million Americans, or 20 percent of the population, suffer from autoimmune diseases.
Others believe that it's because autoimmune diseases are usually chronic, and because they affect primarily women. Dr. Denise Faustman, associate professor at Harvard Medical School and director of the Immunobiology Laboratory at Massachusetts General Hospital, shared her thoughts in an Associated Press interview:
Middle-aged women are not fashionable -- and they are the main victims. It's fashionable to talk about young people dying, children dying. But it's not fashionable to talk about some woman who can't walk down the hallway or loses her job because of arthritis. It's slow and chronic and you don't die and get the attention.In reality, autoimmune diseases as a category are one of the 10 leading causes of all deaths among U.S. women age 65 and younger. According to AARDA, separate from accidents, homicides and suicides, autoimmune diseases are the seventh leading cause of death by disease among females ages one to 14 and the fifth leading cause of death by disease among females ages 15 to 44.
Finally, there's the problem that autoimmune diseases just aren't viewed collectively. Periodically, you'll hear about individual autoimmune conditions. Monaco's Princess Caroline was bald for several years due to the autoimmune disease alopecia. Former Mouseketeer Annette Funicello and talk show host Montel Williams are both publicly battling the autoimmune disease multiple sclerosis. Mary Tyler Moore is a well-known advocate for type I diabetes, having suffered from it since childhood. Radio host Rush Limbaugh suffers from autoimmune-related hearing loss. But rarely are autoimmune diseases discussed comprehensively as a category of conditions.
If autoimmune disease is overlooked at the system-wide level, it is also overlooked at the individual level. I was a fairly typical story. At 31, I had a bad bout of Epstein-Barr virus, followed by months of slow recuperation. Then, at 32, I started noticing slow, steady weight gain, increasing fatigue, and slight depression. When I went in to the doctor three times over six months, complaining about these symptoms and determined to get answers, she decided she needed to test my thyroid, and at 33, I was diagnosed. If I date the "onset" of my autoimmune disease back to the viral illness, it was about two and a half years until I was formally diagnosed.
But I was actually lucky. According to AARDA, the typical autoimmune disease patient faces years of visits to many different doctors before even being diagnosed.
Trusting your own instincts is really the critical first step. But some of us are our own worst enemies. We accept it as a given that after pregnancy, or during menopause, or once we hit our sixties, we're bound to lose hair, suffer appetite and weight changes, feel weak, lose our sex drive, or be unable to sleep through the night. We assume that bone-numbing fatigue is a normal byproduct of a busy schedule and chronic lack of sleep. We look for quick fixes for each problem. We get depressed - we take antidepressants. We gain weight - we take diet drugs. We have muscle pains and aches - we take pain relievers. We don't put the clues together ourselves. And when we don't, we miss the bigger picture.
Getting an expert - the right one who can make the right diagnosis - to take you seriously, is another important step. Even when we haven't missed the bigger picture, doctors might. I receive hundreds of letters from patients each week, and I hear the same stories over and over again. Women and men who suspect they have a health problem - some even suspect an autoimmune condition - but are told to "leave the diagnosing to the experts," or whose HMOs refuse to refer them to specialists, or who are told by physicians, "Of course you're tired, depressed, and feeling sore and achy...you work too hard and aren't getting enough sleep." Or, most commonly, people who are being seen by doctors suffer from what I call "Stressed, Depressed, and PMSed Syndrome," and who assume that seemingly vague symptoms like fatigue, weakness, and mild depression are signs of stress and depression, or in women, hormonal problems. These doctors typically send you home with antidepressants, sleeping pills, or pain relievers, rather than look for an underlying condition to explain it.
Margaret, now in her 60s, never felt healthy most of her life. She noticed numb hands and feet in her late 20s. After having several children, the numbness returned when she turned 40, along with fatigue and sleep problems. After trips to numerous doctors, Margaret kept returning with prescriptions for Valium. When she reached her 50s, the numbness worsened, and the fatigue became indescribable. Says Margaret:
This time, with a MRI of my brain, I was finally given a diagnosis of multiple sclerosis. I was subsequently also diagnosed with autoimmune hypothyroidism. It seems I was born a number of years too early for so complicated an autoimmune disease to be properly diagnosed and corrected.Another woman, Penny, was in her late 40s, with adult children, and she and her husband were finally ready to enjoy life on their own again, when, as she puts it, "my world crumbled." For two years, she suffered with shortness of breath, dizziness and excessive fatigue. She was diagnosed as having as panic attacks and prescribed Zoloft. After two years, her hair was falling out in clumps, she had a large goiter on her neck, and as she describes it, "my husband and I both thought I was having a nervous breakdown, and my 25 year marriage was on the rocks." Another doctor finally diagnosed her with hyperthyroidism, and after treatment, she was able to get her health and her life back on track.
While Margaret and Penny were both diagnosed, there's not always an easy answer for every patient. Some people may have a whole host of symptoms that point to -- but are not fully diagnosable as - various autoimmune diseases. These symptoms may come and go, vary in intensity, but never be sufficient enough to qualify for full diagnosis. After a partial hysterectomy and a bout of swollen neck glands, Joanne started experiencing facial and body spasms, difficulty walking, and reflexes that overreacted to any stimulus, such as an unexpected touch, sound, sight, or taste. Joanne was initially diagnosed with allergies. When further tests ruled out epilepsy, she was then diagnosed as having had a nervous breakdown, then tested again for epilepsy, which came up negative. Traditional doctors said she was having simple muscle spasms, and a naturopath said she had myasthenia gravis. Neurologists then ruled out the myasthenia gravis, but thought perhaps it was multiple sclerosis. After another year, doctors diagnosed a rare autoimmune disease, Stiff Man syndrome. A major turnaround in her health came when plasma exchanges were started, which lessened symptoms considerably, and allowed her to walk on her own, because by this point, she was using a motorized wheelchair. After one plasma exchange, it was discovered that she had almost no calcium, and was hospitalized, near death. More tests revealed she had celiac disease. Subsequently, tests said that she did not have Stiff Man Syndrome. After months of being bedridden, a visiting nurse came to do blood work, and she was also diagnosed with Hashimoto's thyroiditis and put on thyroid hormone replacement. Says Joanne:
Within four days I was out of bed, stretching and relearning how to walk. Within two weeks I was walking around the block. For the first time in eight years I felt positive energy in my body and my attitude. Eventually my health improved. I am in pain, but not as much as I was. Pills have been reduced from 20 plus, to around 4 a day. Depression and extreme fatigue are my major enemies...I am better. So, is it all in my mind? I know it's not. When I wake up after a night's sleep and can't move anything but my mouth, I know so. It's been a battle with doctors, just to get them to understand what happens to me. Getting them to question why is even more difficult.It is for people like Joanne, Penny, Margaret - and you - that I wrote this book. Living Well With Autoimmune Disease will help you trust your own instincts, pinpoint symptoms, and find the right practitioner to help you get a diagnosis.
You need this book if:
After reading Living Well With Autoimmune Disease, you will...
My hope is that you come away from this book understanding that having an autoimmune disease is like having two separate conditions -- the actual condition and its obvious symptoms -- plus a separate, underlying autoimmune dysfunction itself, one that deserves separate attention. And I also hope that you will come away from this book aware of the innovative responses to autoimmune dysfunction that may help you manage your condition, reduce symptoms, prevent future health problems, and perhaps most importantly, give you hope.
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This excerpt from Living Well With Autoimmune Disease is copyright © Mary J. Shomon, 2002. All rights reserved. No unauthorized reproduction.