We Have Lupus - About Us

This site is dedicated to Lauri Amber Reinke-Diggs who succumbed to complications of SLE on December 10, 1999.

The purpose of our We Have Lupus is to provide a free meeting place online for emotional and information support of Lupus patients and their families. Our admin and moderators on the bulletin board are volunteers here to help with questions and to strengthen the faith of those afflicated with Lupus.

About Lupus
Systemic Lupus Erythematosus (SLE), also known as "LUPUS" is a chronic, autoimmune disease which is potentially fatal. The disease usually lasts for the life of the patient once diagnosis has been made and is characterized by unpredictable relapse and remission. The disease generally involves the joints, the skin, the kidney, the brain, serosa, the lungs, the heart and the gastrointestinal tract.

Women and minorities are disproportionately affected by SLE and the most affected age group is generally women of child-bearing age (however, the disease has been reported in both extremes of life. A recent study has found that approximately 2,000,000 persons in the United States has been diagnosed with SLE.

With recent treatments, health care and medications, the diagnosis for patients with SLE have found that 80% to 90% survive ten years.

SLE shares some similarities with HIV infection in that it involves multiple organ involvement, patients suffer from potential life-threatening episodes and the patients require constant (and sophisticated) monitoring. Further, the features of SLE may mimic infectious mononucleosis, lymphoma, rheumatoid arthritis or other "systemic" diseases.

According to the Lupus Clinical Overview, "SLE is an autoimmune disease characterized by immune dysregulation resulting in the production of antinuclear antibodies (ANA), generation of circulating immune complexes, and activation of the complement system". As earlier stated, SLE involves unpredictable episodes of relapse and remission with the patient having little evidence (or precursor signs) of what will cause a relapse or when remission will occur.
The disease is three times more common in African Americans than in American Caucasians.

Approximately 35 new cases per 100,000 population are reported each year.
Discoid Lupus is a SLE subset. This is an illness characterized by non-photosensitive, chronic and potentially scarring skin disease. This SLE subset is usually unaccompanied by ANA or other autoantibodies. Ten percent (10%) of patients with discoid lupus develop systemic lupus. Fifty percent (50%) of all patients with SLE are sensitive to ultraviolet light. This can be a major problem, especially when the disease is active.
80% of SLE patients will develop joint or skin involvement.

Most patients demonstrate photosensitive rashes and alopecia (loss of hair). Generally, patients will develop arthralgia or arthritis, fever, organ involvement, anemia, pulmonary hypertension, mucosal ulcers, dermatological manifestations, raynaudus syndrome, pericarditis, pleuritis, peritonitis, anemia, reticulocytosis, thrombocytopenia, glomeruplopathy (kidney disease), neuropsychiatric complications, antiphopholipid antibody syndrom, retinal vasculitis, and gastrointestinal complications. SLE patients are generally treated with symptomatic steroids, NSAIDs, antimalrials, immunosuppressants, stem cell transplants, and minocyclines.

Lupus patients find that having the disease can be a lonely and frightening experience. While the disease is very common, few people know much about it, its symptoms or how to deal with a patient suffering from the constant relapse/remission syndrome. Almost all cases of lupus are treatable, the disease gradually goes into remission in many cases. Life can be a struggle at times, but SLE patients must be aware of their disease, treatments and medications and take especially good care of themselves.

Many can live a "normal life". However, the disease is potentially life-threatening and some patients have succumbed to complications of the disease.