DETROIT, October 7, 2002 - In many ways, Kate McGraw is an extraordinary woman. She is a major in the United States Air Force, a Ph.D. clinical psychologist, an accomplished fencer and a mother of three children.
Yet, in other ways, McGraw couldnt be more one of the girls. She is one of roughly 30 million American women who suffers from an autoimmune disease. And, like many of those women, she spent nearly 10 frustrating, difficult years trying to get a proper diagnosis.
In 1989, shortly after giving birth to her first child, McGraw says she had difficulties with coordination, memory and concentration that seemed to worsen when she exercised.
I also kept breaking my fingers during sports activities, says McGraw. Being a lifelong athlete, this was, as you can imagine, all cause for great concern. These episodes were followed by years marked by illness - pneumonia (twice), vertigo, vomiting, hair loss, rashes and skin infections, oral and nasal ulcers. While she visited multiple specialists and underwent major medical testing, the only thing doctors said they could find was a sleeping disorder. Ironically, insomnia was not one of her problems.
At that point, the then 29-year-old McGraw recalls I gave up the search in frustration, assumed I was okay and convinced myself that my symptoms were stress-related and that I could overcome them with good stress management, diet and exercise.
According to Virginia Ladd, executive director of American Autoimmune Related Diseases Association (AARDA), Kate McGraw experience is a familiar one. Since the women affected by autoimmune disease are mostly young and in their childbearing years, a time when they are traditionally most healthy, getting a diagnosis can prove to be extremely difficult.
Autoimmune diseases all share the same underlying cause - autoimmunity. It is the process whereby the immune system mistakenly recognizes the body own proteins as foreign invaders and begins producing antibodies that attack healthy cells and tissues, causing a variety of diseases. There are more than 80 known and another 40 suspected autoimmune diseases, including multiple sclerosis, type-1 diabetes, lupus, Graves disease, rheumatoid arthritis, autoimmune hepatitis and Sjögren disease. One of the other factors that makes diagnosis so difficult is that symptoms vary widely, notably from one disease to another, but even within the same disease, said Ladd. And, because autoimmune diseases affect multiple systems, their symptoms are misleading, often hindering an accurate diagnosis.
In fact, a recent AARDA survey found 45 percent of patients with autoimmune diseases have been labeled hypochondriacs in the earliest stages of their illnesses. In McGraw case, although no physician gave her that label, she began to wonder herself.
After convincing herself that she could manage her symptoms, McGraw went back to trying to live a normal life. She enrolled in the clinical psychology doctorate program at the University of Texas Southwestern Medical Center in Dallas, became pregnant with her second child and began fencing competitively. Despite her hectic schedule, she continued to be plagued by ill health. She developed an autoimmune thyroid condition while pregnant, suffered bouts of vomiting, chronic coughing and joint pain. When she woke-up one morning with severe weakness on her left side, McGraw decided it was time once again to get to the root of the problem.
But I was hesitant to re-engage with the medical community given my previous experience, McGraw explained. I truly believed it might be easier to be physically sick than to feel ill and be told by a physician that they could not explain the symptoms.
Referred by a friend to a well-respected rheumatologist in Dallas, McGraw mystery illness began to unravel. She brought with her a chronological list of every symptom and illness she had experienced, and a list of all the myriad test results. Initially, the doctor diagnosed her with Primary Antiphospholipid Antibody Syndrome or PAPS, for short. In this disease, antibodies react against phospholipids (a type of fat), which make up the outside walls of all the body cells. She was immediately placed on the blood thinning medication Coumadin.
After follow-up consultations with doctors specializing in treating PAPS, another diagnosis was arrived at: Mixed Connective Tissue Disease (MCTD). A chronic inflammatory autoimmune disease, MCTD is used to describe overlapping groups of connective tissue disorders that cannot be diagnosed in more precise terms. It is characterized by joint pain, muscle weakness, cardiac, lung and skin manifestations, kidney disease and dysfunction of the esophagus.
Today, her doctor vacillates between calling her illness PAPS and MCTD. In addition, McGraw recently tested positive for Celiac disease. An autoimmune illness where the body develops antibodies against gluten, a protein found in wheat, Celiac disease can lead to malnutrition, as well as destruction of the lining of the small intestine. The only treatment is to eliminate wheat/gluten from her diet.
But McGraw, who is now stationed at Dover Air Force Base in Delaware and serves as a volunteer leader for AARDA, remains positive. The important thing is that the various treatments keep working and I get to continue living my life to its fullest, she says.
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