Why am I doing this page? I have people that are "VERY" close to me that suffer from this disease and it was even feared that my husband had it before he was diagnosed with his Rhuematoid Arthritis. In all actuality, they are sister diseases. I want to inform more people about this disease and what it really is. The butterfly refers to the blotches some patients get and has been adopted as the symbol of hope for this disease.
There are two main classes of lupus. The first is discoid lupus which involves only the skin. Patchy, crusty, red blotches usually develop on the face, but the lesions may occur on any part of the body. The second type is systemic lupus. It involves the internal systems of the body and can occur in any organ, including the skin. It's severity depends on which organs are affected. Even though it is uncommon for a stable case of discoid lupus to progress to systemic lupus, nevertheless this does occur in about 10% of the cases.
Who Gets Lupus?
What Is The Cause?
What Are The Symptoms?
How Is Lupus Diagnosed?
What Is The Treatment?
What Is The Prognosis?
What Is Being Done?
Here Are A Few Facts ABout Lupus:
Lupus suffers more from a lack of awareness than any other major disease.
Lupus is "NOT" infectious, "NOT" rare, "NOT" cancerous, "NOT" a form of arthritis and is "NOT AIDS".
While there is no known cure for lupus, current therapies provide effective treatment for most people with lupus.
Many lupus deaths could be avoided if the patient were diagnosed earlier. "Out of every three patients who die with lupus, two deaths would probably be unnecessary if known treatment were judiciously applied early on." Everette Newton Rottenberg, MD., Clinical Associate Professor, Wayne State University.
Treatment includes being followed by good physician(s) and compliance with the physician(s) advice. A good theraputic regimen includes medication (if needed), patient education, and emotional support.
Donations to help us carry out our work are tax deductible to the full extent allowed by law.
We thank our physicians on our Medical Asvisory Board who serve pro-bono for our organizational work. They are knowledgeable about lupus. However we do not, as an organization endorse any specific physician or physicians to be an absolute authority about the disease. Each patient must, after careful consideration, choose his/her own physician. You will find them listed in the yellow pages, along with other physicians of particular expertise.
What Is Lupus?
One important funtion of the body is to combat infections by producing proteins (antibodies) and cells (lymphocytes) which destroy harmful microorganisms and diseased cells. This funtion is called the "immune" response. In lupus, the immune response apparently becomes confused and the antibodies and lymphocytes attack the body's own normal cells; therefore, lupus is often referred to as an "auto-immune" disease. This auto-immune action occurs in and around the tissues which bind the body parts together, causing inflamation and damage. Therefore, lupus is alternatively called a connective tissue, or collagen disease.
Lupus can affect anyone of any race at any age. However, 90% of the cases are diagnosed in women, typically during their chilkd bearing years. In the United States thousands of the new cases are diagnosed each year, in fact, a national market research study revealed that between 1.4 and 2 million people are reported to have been diagnosed with lupus. More people have it than know about it. It is more common than leukemia, muscular dystrophy, or cerebral palsy. About 5,000 Americans die of complications of lupus every year.
The cause of lupus is unknown; however, certain factors are suspected of triggering the altered immune response. Lupus is "NOT" contagious, although infectious, either bacterial or viral, may be one of these triggering factors. Lupus is "NOT" a form of cancer. Certain chemicals and drugs are also believed to be triggers. Sun exposure, injury, surgery, over-exertion and emotional upsets have all been known to exacerbate disease activity. Although genetics may play a role in lupus, a direct mode of inheritance has not been found. It is thought that a predisposition or susceptibility may be inherited. However, only about 5% of the children of lupus patients develop the disease.
Lupus has been called the "great impersonator" because of the varied symptoms often mimic other diseases. Common symptoms include generalized aching, weakness, lack of energy, weight loss, diminished appetite, fever, chills, frequent infections, and loss of hair (alopecia). About three-fourths os the patients have some type of skin rash; the classic pattern is in the form of an open-winged butterfly over the bridge of the nose and cheeks. One of the most striking syptoms is sensitivity to the sun. Sun exposure can result in an increased severity of the skin rash and may aggravate the systemic illness. A majority of patients experience joint pain with or without stiffness and swelling. The membranes around the heart, lungs and abdominal organs may become inflamed. Excessive bruising, anemia and other blood abnormalities can occur. Kidney or central nervous system involvement are more serious complications. Patients often look remarkably well while their illness is active, a paradox which can create adjustment problems with family, friends and co-workers. It should be stressed that most patients exhibit only a few of these symptoms at one time, and may never experience others. These manifestations can come and go spontaneously, periods called flares and remissions, or they can be more chronic in nature.
A diagnosis of lupus can be developed from a patient's medical history, a physical examination, and laboratory tests. Blood tests, in particular the test for anti-nuclear antibody, or ANA test, can detect changes in the cells and proteins of the blood. Biopsies also may disclose changes that are characteristic of lupus. Yet, diagnosis of lupus is difficult because there is no one set of symptoms or test results common to all patients, and many of the symptoms in lupus are found in other diseases. When early diagnosis does occur, patients often experience anxiety and/or depression as a result of thew uncertainty about their complaints. However, vital research and expanding knowledge about lupus are creating the hope that easier diagnosis can be obtained in the future.
Current therapies provide effective treatment for most people with lupus. Because there is no known cure for lupus, treatment is directed toward relief of symptoms and suppression of harmful inflammation. Many people have such a mild form of the disease that they need no therapy at all. Aspirin and other anti-inflammatory drugs are widely used to control inflammation and joint pain. Anti-malarial drugs are also used, especially especially for patients with skin lessions and joint symptoms. Corticosteroids (for example, prednisone) reduce inflammation and suppress immune reactions as well. Cytotoxic drugs are used in patients unresponding to standard therapy. Research is continuing to evaluate the effectiveness and best way to take these medications to produce the fewest unpleasent side effects. Good therapy should also include patient and family education.
Lupus is a very erratic disease with as many variations as peo0le who have it. The disease may be relatively mild, or more severe with vital organ involvement. While lupus is often a constant problem to the patient, it is not necessarily progressive and it is "NOT USUALLY FATAL". Lupus can be an extremely severe disease, but this is the exception rather than the rule. Early diagnosis, proper treatment, and patient and family education are vital to a good prognosis. Better patient understanding of the disease alleviates fears and helps one realize that a relatively "normal" life can be achieved.
The all volunteer Central Virginia Chapter and other affiliated chapters nationwide, have increased public awareness of lupus through the mass media and by word of mouth, Physicians, specialists, and other professional guest soeakers educate members at meetings on various aspects of the disease, the latest developments in treatment and diagnosis, and research projects. Most chapters have newsletters with wpproved medical articles to inform patients and news about chapter activities. Research is increasing across the country in the attempt to find the cause and cure, and additional funding is necessary to maintain adequate levels of this research. Thousands are awaiting a cure for this baffling and unpredictable disease.
It is estimated that 2 to 2.5 million Americans have lupus. Yet when patients are diagnosed with the disorder, most know very little about it. Lupus - Everything You Need To Know by Robert G. Lahita, MD
