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Living Well With Autoimmune Disease

What Your Doctor Doesn't Tell You-- That You Need to Know

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Updated November 01, 2006

It begins with confusing and baffling symptoms. Vague symptoms, any of which could be a sign of any number of illnesses, are prevalent. All you know for certain is that you feel miserable and you need help to sort out what's wrong. Who do you turn to?

Vague symptoms

Your doctor seems like the obvious choice. What you can't begin to realize is that you are likely starting down a long road, a veritable journey before you reach any real answers. That's the story of many people who suffer with one or more of the autoimmune diseases.  

Symptoms can run the gamut: fatigue, exhaustion, joint pain, weight gain, depression, heart palpitations, hair loss, numbness, and more. Not uncommonly, your doctor will prescribe a medication or treatment to match your specific complaint or symptom. What is astonishing though is that it's not as easy as it sounds in the case of autoimmune disease. In 1996, a survey from AARDA (The American Autoimmune Related Diseases Association) found that patients with an autoimmune disease visited six doctors over a six-year period before obtaining a correct diagnosis. A new survey in 2001 indicated that the situation improved slightly, with patients seeing four doctors over a course of five years, on average, before being properly diagnosed.  

Who's who

"Autoimmune disease" and "autoimmunity" were concepts that were not even recognized or understood until the late 1950s. Even today, the autoimmune diseases are a collection of disorders which are often misdiagnosed, overlooked, or disregarded as something else, especially early on in the course of the disease. Sometimes we hear about it - but most likely we don't understand it - at least not fully. Princess Caroline suffered for several years with alopecia which resulted in baldness. Annette Funicello and Montel Williams have been diagnosed with multiple sclerosis. Mary Tyler Moore has suffered since childhood with type I diabetes. Most recently, talk show radio personality Rush Limbaugh experienced an autoimmune-related hearing loss. Actress Kathleen Turner lives with rheumatoid arthritis. These are celebrities we have heard about, but collectively we don't realize that their conditions are all autoimmune conditions.

The price you pay

Consider these facts:
    Approximately 50 million Americans suffer from autoimmune disease. That's 20 percent of the population or one in five people.
    The AARDA lists 58 specific conditions on its website as autoimmune-related conditions. It is estimated that between 80 and 100 diseases may be autoimmune-related.
    $7.3 billion is spent worldwide on treatments or therapies for autoimmune diseases. 48 percent of that amount is spent on treatments for rheumatoid arthritis alone. By 2006, as new therapies are marketed, especially for psoriasis, the amount is expected to swell to $18.3 billion.
    Treatments for rheumatoid arthritis, multiple sclerosis, inflammatory bowel disease, and psoriasis - four of the most common autoimmune diseases - account for 75 percent of the autoimmune drug trials worldwide.
    Americans spend $87 billion each year in total health costs associated with autoimmune diseases.

That's the cost measured in dollars, but the disruption to a person's life as they experience the aforementioned initially ambiguous symptoms is immeasurable. The fear associated with uncertainty and unanswered questions can be the biggest hurdle for someone with an autoimmune disease.

About Mary

Mary J. Shomon, author of "Living Well with Autoimmune Disease" began her own personal journey with autoimmune disease in 1995. Ultimately diagnosed with Hashimoto's thyroiditis, Mary first was treated by doctors who lacked sure answers and who also had an unacceptable disregard for the importance of recognizing symptoms as autoimmune.

From Mary's own careful, thorough, and highly-praised research, she has written a 475-page comprehensive guide about autoimmune diseases. She begins by explaining the complexities of the immune system in words which are understandable. She explains the most basic fact of an autoimmune disease: that the immune system which normally reacts to invaders, becomes confused and reacts to "self", targeting cells, tissues, and organs of our own bodies.

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