Reprint courtesy of Southern California Chapter, Lupus Foundation of America.
An Autobiographical Sketch By Christine Emilie Jaksy

While driving in my car the other day I happened to glance up and see an unusually blue sky. I realized how grateful I am for being able to participate in life again.
This is my experience with lupus. Unpredictable, insidious, relentless, cunning, baffling, cruel! The sun is not my friend. I also suffer from rheumatoid arthritis, scleroderma, Raynaud‚s, and fibromyalgia. These diseases were thrown into my life's path in the fall of 1991, along with some painful, life-changing lessons to follow. I'm glad I'm alive to write about it.
In 1982, following a four-year basketball scholarship at Chicago's DePaul University, I was diagnosed with thrombocytopenia. Steroid treatment helped, but did not cure the dangerously low blood platelets. A splenectomy (removal of the spleen) in 1985 put me in remission. Little did I know this was the prelude to the onset of lupus seven years later.
In the fall of 1991, my first symptoms arrived after I bought a home with someone I thought was Mr. Wonderful. I fell into the ideation I could save and fix him from his alcoholism. Although I may have been predisposed to autoimmune activity, I firmly believed lupus was triggered by my tumultuous relationship. My first symptoms were fatigue, joint pain and swelling in my hands and wrists. Initially I attributed these to five days of martial arts, and cross training.
Symptoms of Raynaud's shortly followed. My body reacted to the actions of my "ex." Looking back, my body would go into "fight or flight." I didn't have the skills to deal with this man's behavior. My body responded by overproducing antibodies which destroyed healthy tissue.
My athletics stopped as more symptoms arrived: difficulty breathing, muscle weakness, and nose and mouth sores. In early 1992 my internist sent me to my current renowned rheumatologist who instantly diagnosed me. I felt as though a bomb (lupus) had dropped on my life. I was too sick to function.
Pre-lupus, people called me "Superwoman" or "Wonderwoman," referring to my life-long achievements in sports. Until my diagnosis I had spent years making a living as an actress/model. I had it all but didn't know that until I lost it. Nothing was ever good enough. My goals were sky high, as I demanded perfection. Nobody ever teaches you to prepare for a health crisis. Initially I was treated with steroids, chemotherapy, and other lupus meds. I responded to treatment and coasted along until the summer of 1993. The disease then escalated to the point of fulmination in early 1994, which left me incapacitated.
By then my career had dried up, funds were depleted, my relationship was over, and I lost the house we shared. A dark cloud of despair coupled with suicidal ideation became my constant companion. I was facing my own mortality. There appeared to be no way out.
The paradox: "Lord God, where are you? The drugs aren't working. Please help me!"
I struggled with my faith. My body was riddled with pain inside and out. I began to wonder how would I survive?
I realized a power greater than myself: God. He had been carrying me all along. During the time of what I thought to be faithlessness I actually had the most faith. God's presence in my life was evident by the mere fact that I sustained. I found hope. I prayed for purpose. I knew this would make sense some day.
In the spring of 1994, I tried a final chemotherapy. I gained the emotional strength to move out. I found ways to make ends meet until I was able to work again. It was the scariest time of my life as I lost everything that had represented security to me. I was left with nothing but lupus and my two angel dogs.
Lupus brought my focus back to me. I had to learn to apply my care-taking skills to myself!
My survival instincts kicked in and I have been rebuilding my life since. I work as a freelance writer and fine artist, a caregiver to animals and the physically/mentally challenged, and have pieced together some modeling, acting and on-camera spokesperson work again.
Even so, sometimes my body feels stiff, achy and tired. I still get sharp shooting pains in my arms, legs and chest. In spite of these challenges, I get up and go every day with my responsibilities because I have to. I appreciate moments; I love, care for, and nurture myself first; I say "no;" I listen to my body. It lets me know what it needs. I take my meds. Rest, exercise, good food, creativity, love, family, prayer and laughter are my priorities.
I continue to mourn the loss of the old, healthy self who thought she was invincible. I respect the disease. I curse and cherish the lessons lupus has taught me.
Education is power. Learn about your condition. Pray for courage, hope, and purpose. Get away from toxic, abusive people and situations. Be of love and service. Walk through the fears. Ask for help. You don't have to do it alone. Stick around for the miracles. I'm glad I did! Christine Jaksy '97

More people have lupus than AIDS, cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined. LFA market research data show that between 1,400,000 and 2,000,000 people reported to have been diagnosed with lupus. (Study conducted by Bruskin/Goldring Research, 1994.) For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems. Thousands of Americans die each year from lupus-related complications.

DEFINITION
Lupus is a chronic autoimmune disease which causes inflammation of various parts of the body, especially the skin, joints, blood and kidneys. The body‚s immune system normally makes proteins called antibodies to protect the body against viruses, bacteria and other foreign materials. These foreign materials are called antigens. In an autoimmune disorder such as lupus, the immune system loses its ability to tell the difference between foreign substances (antigens) and its own cells and tissues. The immune system then makes antibodies directed against "self." These antibodies, called "auto-antibodies," react with the "self" antigens to form immune complexes. The immune complexes build up in the tissues and can cause inflammation, injury to tissues, and pain.

TYPES OF LUPUS
There are three types of lupus: discoid, systemic, and drug-induced. Discoid lupus is always limited to the skin. It is identified by a rash that may appear on the face, neck and scalp. Discoid lupus is diagnosed by examining a biopsy of the rash. In discoid lupus the biopsy will show abnormalities that are not found in skin without the rash. Discoid lupus does not generally involve the body‚s internal organs. Therefore, the ANA test, a blood test used to detect systemic lupus, may be negative in patients with discoid lupus. However, in a large number of patients with discoid lupus, the ANA test is positive, but at a low level or "titer."
In approximately 10 percent of the people with lupus, discoid lupus can evolve into the systemic form of the disease, which can affect almost any organ or system of the body. This cannot be predicted or prevented. Treatment of discoid lupus will not prevent its progression to the systemic form. Individuals who progress to the systemic form probably had systemic lupus at the outset, with the discoid rash as their main symptom.
Systemic lupus is usually more severe than discoid lupus, and can affect almost any organ or system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms. Systemic lupus may include periods in which few, if any, symptoms are evident (remission) and other times when the disease becomes more active (flare). Most often when people mention "lupus," they are referring to the systemic form of the disease.
Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). However, not everyone who takes these drugs will develop drug-induced lupus. Only about 4 percent of the people who take these drugs will develop the antibodies suggestive of lupus. Of those 4 percent, only an extremely small number will develop overt drug-induced lupus. The symptoms usually fade when the medications are discontinued.

CAUSE
The cause(s) of lupus is unknown, but environmental and genetic factors are involved. While scientists believe there is genetic predisposition to the disease, it is known that environmental factors also play a critical role in triggering lupus. Some of the environmental factors that may trigger the disease are infections, antibiotics (especially those in the sulfa and penicillin groups), ultraviolet light, extreme stress, and certain drugs.
Although lupus is known to occur within families, there is no known gene or genes which are thought to cause the illness. Only 10 percent of lupus patients will have a close relative (parent or sibling) who already has or may develop lupus. Statistics show that only about 5% of the children born to individuals with lupus will develop the illness.
Lupus is often called a "woman‚s disease" despite the fact that many men are affected. Lupus can occur at any age, and in either sex, although it occurs 10-15 times more frequently among adult females than among adult males. The symptoms of the disease are the same in men and women. People of African, American Indian, and Asian origin are thought to develop the disease more frequently than Caucasian women, but the studies that led to this result are small and need corroboration.
Hormonal factors may explain why lupus occurs more frequently in females than in males. The increase of disease symptoms before menstrual periods and/or during pregnancy supports the belief that hormones, particularly estrogen, may be involved. However, the exact hormonal reason for the greater prevalence of lupus in women, and the cyclic increase in symptoms, is unknown.

TREATMENT
For the vast majority of people with lupus, effective treatment can minimize symptoms, reduce inflammation, and maintain normal bodily functions. Preventive measures can reduce the risk of flares. For photosensitive patients, avoidance of (excessive) sun exposure and/or the regular application of sun screens will usually prevent rashes. Regular exercise helps prevent muscle weakness and fatigue. Immunization protects against specific infections. Support groups, counseling, talking to family members, friends, and physicians can help alleviate the effects of stress. Needless to say, negative habits are hazardous to people with lupus. These include smoking, excessive consumption of alcohol, too much or too little of prescribed medication, and postponing regular medical checkups.
Treatment approaches are based on the specific needs and symptoms of each person. Because the characteristics and course of lupus may vary significantly among people, it is important to emphasize that a thorough medical evaluation and ongoing medical supervision are essential to ensure proper diagnosis and treatment.
Medications are often prescribed for people with lupus, depending on which organ(s) are involved and the severity of involvement. Effective patient-physician discussions regarding the selection of medication, its possible side effects, and any changes in doses are vital.
People with lupus should learn to recognize early symptoms of disease activity. In that way they can help the physician know when a change in therapy is needed. Regular monitoring of the disease by laboratory tests can be valuable because noticeable symptoms may occur only after the disease has significantly flared. Changes in blood test results may indicate the disease is becoming active even before the patient develops symptoms of a flare. Generally, it seems that the earlier such flares are detected, the more easily they can be controlled. Also, early treatment may decrease the chance of permanent tissue or organ damage and reduce the time one must remain on high doses of drugs.

PROGNOSIS
The idea that lupus is generally a fatal disease is one of the gravest misconceptions about this illness. In fact, the prognosis of lupus is much better than ever before. Today, with early diagnosis and current methods of therapy, 80-90 percent of people with lupus can look forward to a normal life span if they follow the instructions of their physician, take their medication(s) as prescribed, and know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus. Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization. There are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician‚s instructions.

DIAGNOSIS
Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be difficult to diagnose. Diagnosis is usually made by a careful review of a person‚s entire medical history coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status. Currently, there is no single laboratory test that can determine whether a person has lupus. To assist the physician in the diagnosis of lupus, the American Rheumatism Association issued a list of 11 symptoms or signs that help distinguish lupus from other diseases (see Table 2). A person should have four or more of these symptoms to suspect lupus. The symptoms do not all have to occur at the same time. TABLE 2. THE ELEVEN CRITERIA USED FOR THE DIAGNOSIS OF LUPUS
CRITERION ..................................DEFINITION
Malar Rash ...................................Rash over the cheeks
Discoid Rash .................................Red raised patches.
Photosensitivity..............................Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers....................................Ulcers in the nose or mouth, usually painless
Arthritis......................................... (arthritis in which the bones around the joints do not become destroyed)
Serositis .........................................Non-erosive arthritis involving two or more peripheral joints

Pleuritis or pericarditis...................Inflammation/Pain around the lining of the Lungs or Heart
Renal Disorder...............................Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test ....................................................sticks) and/or cellular casts (abnormal elements the urine, derived ....................................................from red and/or white cells and/or kidney tubule cells)
Neurologic.................................... Seizures(convulsions) and/or psychosis in the absence of drugs or ....................................................metabolic .disturbances which are known to cause such effects
Hematologic Disorder......................Hemolytic anemia or leukopenia (white blood count below 4,000 ....................................................cells per cubic millimeter) or lymphopenia (less than 1,500 ....................................................lymphocytes per cubic millimeter) or thrombocytopenia (less ....................................................than 100,000 platelets per cubic millimeter). The .leukopenia ....................................................and lymphopenia must be detected on two or more ....................................................occasions. The thrombocytopenia must be detected in the absence ....................................................of drugs known to induce it.
Immunologic Disorder ....................Positive LE prep test, positive anti-DNA test, positive anti-Sm test or ................................................... false positive syphilis test (VDRL).
Antinuclear Antibody ......................Positive test for antinuclear antibodies (ANA) in the absence of ....................................................drugs known to induce it.
Adapted from: Tan, E.M., et. al. The 1982 Revised Criteria for the Classification of SLE. Arth Rheum 25: 1271-1277. TABLE 1. SYMPTOMS OF LUPUS
Although lupus can affect any part of the body, most people experience symptoms in only a few organs.
Table 1 lists the most common symptoms of lupus.
SYMPTOM .....................................................................................................................PERCENTAGE
Achy joints (arthralgia)...................................................................................95%
Fever over 100 degrees F (38 degrees C)......................................................90%
Arthritis (swollen joints).................................................................................90%
Prolonged or extreme fatigue..........................................................................81%
Skin rashes....................................................................................................74%
Anemia..........................................................................................................71%
Kidney involvement........................................................................................50%
Pain in the chest on deep breathing (pleurisy)..................................................45%
Butterfly-shaped rash across the cheeks and nose...........................................42%
Sun or light sensitivity (photosensitivity)..........................................................30%
Hair loss.........................................................................................................27%
Raynaud‚s phenomenon (fingers turning white and/or blue in the cold)..............17%
Seizures..........................................................................................................15%
Mouth or nose ulcers......................................................................................12%

LUPUS FOUNDATION OF AMERICA
The purpose of the LFA is to assist local chapters in their efforts to provide supportive services to individuals living with lupus, to educate the public about the disease, and to support research into its cause and cure. Last year over 200,000 people received service from the LFA and its chapters.
For more information about various aspects of lupus, contact the Lupus Foundation of America (800)458-7870.
The information contained in this article is provided with the understanding that the Foundation is not engaged in rendering medical advice or recommendation. The material provided is designed for educational purposes only.