Individuals with mild SLE find their symptoms are easily controlled, allowing them to continue a relatively normal life-style while experiencing long periods of remission. For those of us who suffer severe disease activity and organ involvement, our conditions may be regulated, but symptoms are rarely ever absent. We live with constant pain, muscle weakness, disabling fatigue, frequent infections, and an endless variety of multi-system complications.

Most lupus patients also experience any number of secondary conditions, such as Asthma, Diabetes, Fibromyalgia, Sjogren's Syndrome, Raynaud's Phenomenon (and other forms of Vasculitis), Thyroid disease, CREST syndrome, and Anemia, to name a few. These conditions have over-lapping symptoms and it is often difficult or even impossible to know which disorder is responsible for the patient's current problems.

Presently, lupus is being treated with steroid-therapy, anti-malaria medications, and chemotherapy drugs. These are not as effective as we need them to be, and each of these medications have serious side-effects. We often must take additional medications to off-set the side-effects of our lupus treatments. Corticosteroids, such as Prednisone, remains the number one treatment for the majority of lupus and lupus-related problems. However, this synthetic hormone presents a number of potentially serious side-effects, including osteoporosis, bone and muscle deterioration (requiring joint replacements), stomach ulcers, diabetes, elevated cholesterol, increased susceptibility to infections, and prolonged healing time. Though not physically dangerous, the emotionally-detrimental affect of steroids is substantial weight gain. This extra weight tends to center in the abdomen, accompanied by severe bloating and water-retention, and produces the typical rounded "moon" face.

Ninety percent of lupus patients are female, and 90% of those are in childbearing years. However, some 20 - 30% of adults diagnosed with SLE displayed symptoms in childhood, as early as age 3. A research study in the early 1970's offered a possible explanation for the low incidence of lupus in men. The vast majority of fetuses miscarried by women with lupus were found to be males. Therefore, so few men have lupus because most unborn males with the lupus gene do not survive.

Lupus is often triggered by extreme physical or emotional stress, sun exposure, or infection, as these conditions activate the immune system, yet there is no specific cause for its occurrence. Due to the physical stress and sudden drop in cortisone involved, childbirth can be a leading trigger for lupus onset or exacerbation. The fetus produces extra cortisone, and once the child is born, the drop in this hormone can cause the mother to experience increased disease activity. All lupus pregnancies should be considered high-risk. Patients with the Anti-Coagulant Syndrome -- especially those with high levels of anticardioplins -- are especially at risk. If kidney involvement is also present, the chances of carrying a healthy baby to term are more decreased. Miscarriage, fetal death, blood clots which can travel either to the fetus or to the mother's brain or lungs, and excessive bleeding can result. Even so, when monitored carefully and properly treated, most are without severe complications. Women at the greatest risk are those who have not been diagnosed and therefore are not being followed and treated properly. Neo-natal lupus (in the infant) can also occur, though this conditon resolves within a few weeks and the child does not have lupus. However, up to 50% of children born to women with SLE will carry the "lupus gene", though only 25% will develop lupus or other auto-immune diseases.

Systemic lupus is known as the "Great Imitator", as it mimics the symptoms of many other diseases. A lupus patient often presents with complaints resembling rheumatoid arthritis, diabetes, mononucleosis, colitis, allergies, and epilepsy. For years, it was believed that SLE merely mimicked the symptoms of Multiple Sclerosis (MS), but then a stronger connection began to emerge. Some patients with confirming lab work for lupus presented primarily with symptoms of MS. I happen to be one of them. The two conditions became known as "sister" diseases, though a definite link had not yet been found. Recently, it has been discovered that the same gene is responsible for both disorders and many scientists now believe that SLE and MS are actually variations of the same disease.

Systemic Lupus (* as opposed to Discoid Lupus, which affects only the skin) is an extremely difficult disease to diagnose for a number of reasons. SLE produces the greatest number of auto-antibodies found in any disease, thereby resulting in the widest variety of symptoms encountered in any illness. In the early stages of lupus, symptoms often come and go over months or even years, and may occur independently or simultaneously. There is no specific laboratory test for a definite diagnosis of lupus, and many times a conclusion must be drawn by a "differential diagnosis" -— one which is determined after all other possible diseases are eliminated. While the American College of Rheumatism has developed a list of criteria for diagnosing Systemic Lupus, lab results in lupus patients can be deceiving. Likewise, even those symptoms which are known almost exclusively to this disease are present in only a small percentage of lupus patients.
* (Discoid Lupus (DLE) is also a devastating disease, chronic and incurable, though it is not life-threatening. However, this site focuses on Systemic Lupus, as I've not found resources that offer much information on DLE. This is not to discount the suffering of DLE patients, but is merely a lack of information. My apologies to those of you who suffer from DLE.)

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The "butterfly rash" —- a red facial rash, covering the nose and cheeks —- is the first on the list of lupus criteria and considered to be a tell-tale sign of the disease. However, this rash occurs in less than 20% of lupus sufferers. Likewise, the lupus phenomenon of photosensitivity —- a severe reaction to the ultra-violet rays of sunlight and some types of flourescent lighting —- ranks among these diagnostic criteria, and yet is experienced by only about 35% of the lupus population. In laboratory findings, an auto-antibody known as "anti-SM" occurs almost exclusively in SLE, but as many as 70% of lupus patients do not test positive for this particular antibody. Anti-DNA is another auto-antibody which is a sure sign of lupus, yet only 50% of lupus patients have this antibody. Another peculiarity found in lupus is the false-positive serum test for syphilis. Patients find this lab result quite upsettling, though SLE is in no way related to the syphilis infection. It is a FALSE-POSITIVE result, caused by the presence of auto-antibodies known as "Anti-phospholipids" (the most common being "anti-cardiolipins" or ACL). The body's natural "cardiolipin antibodies" are the agents which would combat a syphilis organism, if it were present. One of the many auto-antibodies produced by lupus happens to be one which attacks cardiolipins -— thus, under the microscope, the body "appears" to be fighting a syphilis organism. This result is easily confirmed as being false-positive with an additional, more sophisticated blood test. When this occurs, it is indicative of a serious lupus condition called the "Lupus Anticoagulant Syndrome". This blood disorder can lead to either excessive clotting or excessive bleeding, making this particular form of the disease extremely difficult to treat. Medications to prevent clots in the veins can lead to excessive bleeding, while medications to increase blood density could lead to clotting formations. Additional complications include the formation of blood clots which can break loose and travel to various parts of the body; heart disease; visual impairments or blindness; TIA's and stoke; pulmonary embolus (blood clots in the lung), vascular headaches, miscarriage, and comma. One third of all lupus patients have the Anticoagulant Syndrome, and yet, not all of these present with a false-positive serum test for syphilis. Only 20% of the entire lupus population display this particular sign listed on the diagnostic criteria. The Lupus Anticoagulant Syndrome is confirmed by a blood test for antiphospholipids, which tests the levels of Isotypes IgG, IgM, & IgA. If you have never received this particular lab test, please ask your physician to order it for you. Something else to keep in mind is that, for the same reason noted previously, Lupus patients can also produce a false-positive HIV test. This too, can be easily proven false-postive by the "Western Blot" test. Though there is not scientific proof as of yet, it has been discovered that lupus patients seem to have a natural immunity to cancers and the AIDS virus.

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With connective tissues and organs being the primary targets of Systemic Lupus, its damage occurs internally. As a result, lupus has been called the "Invisible Disease". Unless the skin is involved, the devastating effects of SLE cannot be seen. Even seriously ill individuals often "appear" perfectly healthy. All of these facts, combined with the very real shortage of physicians who are adequately trained to recognize the symptoms of SLE, many sufferers experience permanent organ damage before a lupus diagnosis is made and treatment implicated. Most patients have had symptoms 3 - 10 years prior to receiving a proper diagnosis, which means many years of suffering and thousands of dollars spent in seeking relief. Many are mis-diagnosed and therefore prescribed treatments fail to eradicate the problems. Being female, our complaints are generally blamed on depression or hormonal imbalances. It is my opinion that women in general are not the emotional weaklings we have been labeled. However, quite commonly lupus patients have been referred for psychological counseling at some point during those years of seeking a diagnosis. Due to this lack of understanding and awareness of SLE, coupled with the difficulties in the diagnostic process, many of its victims suffer relentless attacks of the disease while being falsely-accused of hypochondria, laziness, exaggerations, and worse — by our close relations and physicians as well. As a result, we suffer self-doubt, shame, and silent anger, in addition to our physical pain. We learn to be secretive about our conditions and become increasingly isolated, both emotionally and socially.

It is estimated that 2 in 185 Americans have Lupus, and is present in 2 in 1,000 individuals world-wide. This gives an estimate of 2 million Americans alone (excluding those in other countries) suffering the devastating effects of systemic lupus, making it more common than leukemia, cystic fibrosis, muscular dystrophy, sickle-cell anemia, and multiple sclerosis combined. Yet, lupus suffers more from lack of awareness than any other major disease. These statistics are only of those diagnosed and do not account for the thousands who are suffering, still seeking a diagnosis.

A recent national survey of 1,000 adults revealed that while 65% of respondents claimed awareness of lupus, a mere 22% of all respondents knew that SLE strikes mainly women. Only 20% of those surveyed could offer accurate, basic information on the disease. Moreover, our ultimate detriment lies in the lack of knowledge among our health care providers. Rheumatologist and scientist Daniel J. Wallace, M.D., Clinical Chief of Rheumatology at Cedars-Sinai Medical Center, and Clinical Professor of Medicine at UCLA School of Medicine in Los Angeles, CA. stated, "It is my opinion that there is a real shortage of doctors capable of diagnosing and treating SLE."
The sad irony is that successful treatment of organ involvement lies in early detection and aggressive therapies. Tens of thousands of Americans die from lupus each year, and yet, at least 1 out of 3 deaths could be prevented with earlier diagnosis and treatment.

The solution to these many dilemmas is within our grasp, but again, lack of awareness cripples our chances of attaining this promise, just as the disease disables our minds and bodies, destroys normal living, damages our family relations, and disturbs our children. With each new congressional bill presented for research funding into SLE, there is hope. But each of us, our friends, families, and physicians must get involved by urging support of further lupus research and care funding. You can access all the current information at the LFA Website.

For those of you not affected by Systemic Lupus, you may be wondering how a federally-funded research could be beneficial to you and your families. Once you understand the implications of this much-needed research program, you will realize the promise of its far-reaching effects...

SYSTEMIC LUPUS IS THE ONE DISEASE whose basic pathological factors (those which cause the illness), get to the very core of understanding how the human immune system functions. This is because systemic lupus affects every part of the body. Medical students are often told,

Lupus is NOT infectious nor contagious, is not cancerous, and is in no way related to any sexually-transmitted diseases, yet all of these serious conditions are immune-related disorders. A better scientific understanding of SLE is the KEY to many of our nation's life-threatening diseases, yet lupus research has been ignored because it is a disease which affects primarily women. It is fact that research into female diseases is funded to a lesser extent than even less common disorders which affect men equally or predominantly. A survey done in the late 1980's showed that 70 to 80% of all research participants in the United States were men. Without a doubt, if the population of patients suffering from lupus were 90% male, the medical community would be more responsive.

Take for example that 90% of AIDS victims are males in contrast to 90% of Lupus victims being female... In the 1996 fiscal year, medical research grants were awarded as follows: AIDS received a staggering $829 million, breast cancer $383 million, and lupus received only $33 million from the National Institute of Health. And Lupus has been around for hundreds of years, while AIDS has only been known for less than 20 years. Yes, AIDS is deadly, but so is SLE. AIDS can actually be prevented by practicing safe sex and not using street drugs, yet nothing can be done to prevent Lupus. AIDS today is a direct consequence of lifestyle choices while Lupus is not. Although breast cancer is a female disease, you must keep in mind that cancers of all types affect men and women equally. Lupus has been studied since the mid-1800's, yet a cure is nowhere in sight, while most diseases carried over into the 20th Century have virtually been eradicated.

With further research into SLE, our nation could witness a medical revolution in the coming century in which many of our major diseases could possibly be eradicated. Yet, without your voice urging your Senators to become involved in Lupus research and care, our disease will remain widely ignored and misunderstood. What a disastrous effect this would have on the more than one million Americans who suffer from lupus and other life-threatening diseases which would benefit from this research. And what a tragedy for the advancement of studies into ALL FEMALE DISEASES!

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