What is Lupus and Who Gets It?
What is Lupus?
Lupus is an Autoimmune disease where the patient's immune system creates antibodies which attack the body instead of protecting it. It manifests in three basic forms, Systemic Lupus Erythematosus (SLE), Discoid Lupus Erythematosus (DLE) and Drug-Induced Lupus Erythematosus (DILE). DLE can sometimes progress into SLE but that is rare (less than 10% of the cases). DILE is almost always reversible within about 6 months after removal of the offending drug. SLE is the type talked most about on this group but sufferers can have symptoms that are common to DLE also. Lupus is a disease that is grouped with other diseases sometimes called Collagen Vascular Diseases or Connective Tissue Diseases (CTD).
SLE is a very personal disease, as it can take many forms and therefore is called the disease with a thousand faces. Diagnosis is difficult, the cause is unknown, and the symptoms vary widely from one patient to another and from day to day for the same patient. While some people are severely affected by Lupus, many others can live virtually normal lives.
To TopWho Gets Lupus?
Lupus mainly attacks women during their child-bearing years (ages 15-50) but men and even young children can be affected. Only 10% of lupus patients are male. Women of color are more likely to have Lupus compared to Caucasian women.
To TopIs Lupus Infectious?
No. Lupus is neither infectious nor contagious - the cause is not known though research has provided evidence implicating heredity, hormones and infections, including viruses. It is thought that the genetic predisposition lies dormant in the body until some trigger from outside the body sets the process in motion. See Can I inherit Lupus?
To TopHow do I find out more about Lupus?
Firstly, read ASL.; however, there are a tremendous number of excellent resources for information about this disease and its variants. Lupus Links contains a list of Internet resources for Lupus and related disorders. These are sites that ASL members have found helpful. We cannot and do not verify the veracity of the information on these sites. As with all Usenet groups, feel free to ask questions, specific or otherwise - someone here can likely direct you to the best place to get more information.
An excellent and relatively inexpensive source for understanding Lupus, and for helping your family or friends understand the disease, is Dr. Daniel Wallace's The Lupus Book (second edition.) This book is often referred to as the "lupie's Bible". It is comprehensive yet easy to read and understand. It is one of several books about lupus approved by The Lupus Foundation of America (LFA). Dr. Wallace, a recognized authority on lupus and related disorders, has also recently released a book on Fibromyalgia Syndrome (FMS).
To TopCan I inherit Lupus?
There is known to be a genetic component involved in the susceptibility to a large number of diseases, including SLE. However, as is the case with many other related diseases, the genetics of SLE are complex and not within the scope of this document. [See The Lupus Book for more information.] So far, no single gene has been implicated as being responsible for causing lupus, although at least one gene has been found to be common among some lupus patients. Also, though quite a bit is known today about various genes common to lupus subsets and autoantibodies, genetic research into the cause of lupus is still in its infancy. However, some important conclusions can still be drawn.
People with SLE and/or DLE generally have a genetic predisposition for lupus. This is not to say that there is a direct genetic cause. Rather, it appears that certain people have an inborn (genetic) susceptibility to lupus, which at some point may be activated by some environmental stimulus (such as a virus, trauma or chemical exposure). At that point, many genes contribute to the disease process. In fact, there are some specific genetic markers which appear to play an important role in bringing about certain types of major organ involvement and causing other syndromes (such as Antiphospholipid Syndrome (APS) and Sjögren's) which may accompany SLE. However, not everyone with SLE and/or DLE has every marker. These wide ranging differences make SLE a very individual disease which is not easily diagnosed and is a challenge to manage.
Although the risk to the child of a lupus patient developing the illness is somewhat greater compared to the general population, the likelihood of SLE in the child remains low (approximately 2% for boys and 10% for girls). On the other hand, the chance of an identical twin of a lupus patient developing the disease is somewhat higher (anywhere between 26-70%), while the risk of the fraternal twin of a lupus patient is comparable with that of other siblings (5-10%). These data support the supposition that while lupus has a genetic basis, it takes an environmental trigger to set it off, and that environmental factors also play a major role in the disease course.
To TopWhat are Lupus Subsets?
Lupus subsets aren't different kinds of lupus but different groupings of symptoms. One example would be CNS Lupus: this is still SLE, just as lupus which primarily manifests in the kidney is SLE and lupus which primarily manifests in the joints is SLE. It has been recognized that with lupus, the involvement will be much more concentrated in one area than another (in general). Specific areas of involvement present their own special problems and often require specialized tests and treatments. This being the case, they are now often referred to as 'lupus subsets'. DLE is not a subset but a different kind of lupus altogether, as is DILE. The expression, or subset, is simply a means of classification. There are certain genes and autoantibodies which are extremely common in certain subsets but not others. One example of this would be anti-Ro (SSA), which is very common in people with ANA-negative lupus and those with Secondary Sjögren's.
To TopI got this scary book from the library...
If its more than 10 years old it's out of date! The older the book, the gloomier it is. There are two main reasons for this: 1) treatment has improved, so more patients live longer and better lives; 2) diagnosis has improved, so milder cases are recognized - thus the average lupus patient is less ill than was assumed 10 years ago.
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