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What is lupus?

Lupus is an incurable autoimmune disorder characterized by flare-ups of disease activity of unpredictable duration, generally followed by symptom-free periods. Its wide variety of symptoms range from mild to life threatening, and often mimic other diseases. Because of this, lupus is referred to as "The Great Impostor"

What is an autoimmune disorder?

Autoimmune disorders attack "self." The immune system in a person who has lupus produces too many antibodies. Some of these antibodies become auto-reactive (attack self) and inflame and damage tissues and organs. Current thinking is that auto-immune disorders result from faulty communication between B cells and T cells. (B cells normally produce antibodies or stop producing them on direction from T cells). It is thought that in lupus, this communication goes awry and B cells may not get the message from T cells to stop making antibodies, or the message B cells do receive is scrambled.

Who gets lupus?

Women between the ages of 20 and 40 most often get lupus; in fact, nine times more women than men get it. Children also get lupus, but much less frequently. The number of lupus patients worldwide is not well documented. The disease may affect as many as 1 in 1000 people or be more prevalent.

What causes Lupus?

The cause or causes have not been isolated, but scientists throughout the world are studying the immune system. Much attention now is on immunoregulation, the switch-like mechanism that turns the immune response on and off. (See "What is an autoimmune disorder" above.)

What is being done?

Scientific Studies: Researchers are investigating hormonal, genetic, viral, and environmental causes. Many are focusing on the immune system's communication process, and in particular a method to determine which B cells develop the ability to attack self. Lupus Canada is undertaking the task of collecting and posting to their web site the research that is taking place worldwide. This project will begin in November 2000. Clinical Management: Physicians today have a better understanding of lupus, more reliable diagnostic tests, and a greater variety of treatments to offer patients. Volunteer Sector: Proactive men and women who have lupus, or who have an interest in lupus, work together within self-help organizations across Canada and beyond to promote awareness, educate patients, lobby for improvements, and raise funds for research.

What are the symptoms of lupus?

Lupus can inflame and damage any organ or system
Symptoms may include one or more of the following:

lack of energy
low grade or spiking fevers
loss of appetite
weight loss or weight gain
frequent infections
anemia or low white blood count
rashes - typically on the bridge of the nose and across the cheeks in a butterfly shape. (Discoverers of lupus thought that the rash resembled the mask-like configuration on the face of a wolf, and named the disease LUPUS which means WOLF, in Latin).
hair loss (alopecia)
ulcers in the roof of the mouth;
allergy to sun (exposure may bring on any of the variety of sypmtoms associated with lupus)
red, swollen, painful joints or muscles
convulsions; psychosis; nerve abnormalities that cause strange sensations or alter muscular ability
nephritis (kidney problems)
phlebitis (inflammation of the blood vessels)
pleurisy; pericarditis (inflammation of the membraneous sac surrounding the heart) and/or peritonitis [taken together this type of inflammation is known as polyserositis].
In 1982, the American Rheumatism Association published a revised set of criteria to aid physicians in making the diagnosis of Lupus [stating that] "A physician observing 4 of the 11 criteria below...should be suspicious to the possibility of Lupus [as] the underlying disorder."

The 11 criteria

malar rash
discoid rash
oral ulcers
renal disorder
hematological disorder
immunological disorder
neurological disorder
positive ANA test result
Physicians were cautioned, however, "to be careful in utilizing criteria for an individual case, as other diseases could also conform to the criteria". The diagnosis of Lupus today is usually based on these findings:

evidence of a multi-system disease (more than one organ involved);
the presence of antibodies;
the exclusion of other diseases and disorders which can mimic the features of Lupus.

Diagnosis-why so difficult?
"No single set of symptoms are uniformly specific to Lupus and no laboratory test can prove Lupus conclusively; ...diagnosis is usually made after careful review of medical history, and analysis of blood results and lab tests, plus some specialized tests related to immune system status. Despite advances in medical education and technology it is still not uncommon for Lupus to be incorrectly diagnosed or require a lengthy period of time to be diagnosed, mainly because the symptoms vary so widely, come and go frequently, and because the disease mimics so many other disorders."

Following an initial assessment for symptoms (listed above), your doctor will order blood tests to try and rule out, or confirm, that you have systemic involvement. Systemic Lupus Erythematous (SLE) can affect multiple systems and organs, including the skin, whereas Discoid Lupus, a milder form, primarily affects the skin, although fatigue, hair loss, joint pain, or other symptoms may be present as well. Sufferers of Discoid Lupus, however, may never develop systemic involvement.

Tests for Diagnosing Lupus include
The Antinuclear antibody test (ANA). As high as 99% all lupus patients have a positive antinuclear antibody test. BUT a positive ANA test, in the absence of clincial findings, does not confirm the diagnosis of lupus. A positive ANA means that antinuclear antibodies are in your blood. If you have a positive ANA and symptoms, your doctor will want to find out if you have DNA antibodies in your blood.

The DNA antibody test is more specific for a diagnosis of lupus, but these antibodies are not present in all patients with lupus. Your doctor may also order blood tests which will show the presence of more specific antigens in the RNA family.The RNA test is positive for one or more of this familiy of antigens in about 85% of SLE (Systemic Lupus Erythematosus) patients.

"An important fact to remember concerng the treatment for Lupus is that the diagnosis does not indicate the particular therapy to be used. In the absence of a cure, present-day treatment of Lupus is still primarily tailored to symptomatic relief and not to the diagnosis." (Excerpts from Diagnosis Can Be Difficult -- a selection from the Lupus Foundation of America Newsletter Article Library, distributed in Canada by Lupus Canada).

Monitoring Lupus
What happens after you are diagnosed with Lupus?
Your doctor will order routine, regular blood tests to keep track of how you are doing...tests such as: CBC - blood work to monitor activity (this will influence medication decisions);
Urinalysis - urine sample to find out how your kidneys are functioning;
Other tests - to check the variety of symptoms that you may have.

What you can do for yourself
Learn as much as you can about Lupus and the way it affects you. Join a local Lupus organization to get current information and talk with others who have Lupus and who can help you and your family and friends understand your illness. People who have Lupus may offer the advice: "be kind to yourself...get adequate rest (especially during flare-up periods); wear a sunscreen when you go out of doors; avoid highly stressful situations if possible; take your medications as prescribed, and see your doctor regularly."

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