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Systemic lupus erythematosus (SLE) is an autoimmune disorder that affects disproportionately affects women of color.   An auto immune disorder is a disease state where the body’s immune system (abnormally) attacks its own organs and tissues.  Our immune systems are complicated, and efficient.  When it focuses on killing bacteria, viruses, fungi, and parasites we maintain our great health.  When that same complicated and efficient immune system directs its forces against our own heart, kidneys, or other bodily organs, they really cause damage.

Toni Braxton

Because the immune system is complicated and in Lupus can attack any organ or tissue, the clinical manifestation is complicated and can involve any organ or tissue.  Meaning, the symptoms that you experience will depend on which organ/tissue is being attacked at that moment.  If the immune system is really causing damage to a very important organ like the heart, death can result.  If the immune system attack is rare and weak, the symptoms will be mild and intermittent.

The cause of SLE is unknown.  We do know that certain drugs can cause a “lupus-like” illness, but really no one is really sure of the cause of the disease.  Like most medical illnesses, it’s probably a combination of a genetic predisposition (meaning that because of your genes, you’re more likely to get the disease), hormone issues, all in the setting of triggering environmental insult.

There is evidence that genetic contributing factors are found on genes of the MHC HLA-A1, B8, and DR3, and deficiencies of the immune complement factors C1q, C2, C4.  There is evidence that environmental exposures can trigger SLE in susceptible people such as silica, pesticides, mercury, and as mentioned, some drugs.  Additionally, Epstein-Barr virus (EBV) may contribute to the development of SLE.

Demographics: SLE is more common in women to men in a ratio of 10:1, and typically the disease affects women ages 10 – 50 (most typically after puberty in the 3rd and 4th decade of life).  Women of color are more affected than white women in a ratio of 4:1.  Smokers are also at increased risk and have worse disease than non-smokers.  Interestingly, SLE is most common in women of West African descent who move away from their homeland.

So what does lupus look like?  There are various criteria that physicians use to make the diagnosis.  The diagnosis is not easy to make because the symptoms wax and wane, are intermittent, typically are very non-specific, and can be attributed to many other issues.  Nonetheless, there is a chart with 11 various signs and symptoms outlined.  If a patient suffers from 4 of the 11, a diagnosis of lupus can be made.  The problem with this is the various signs and symptoms can range from barely noticeable and attributable to many other conditions or situations to life-threatening illness NOT due to SLE.  So, how do you really know if the problem is lupus, or something else?  This is why the diagnosis of SLE is often a laborious process, and taking up to 4 years to diagnose is not uncommon.

Signs and symptoms used to help diagnose lupus include:

  • Skin rashes – red, patches, sometimes with scaling and scar, on the cheeks.  Abnormal sensitivity to sunlight which causes a skin rash.
  • Mouth sores or ulcers.
  • Joint pain and swelling – arthritis
  • Serositis – which is inflammation of the lining of the lung producing pain and/or fluid collection called pleural effusion; or evidence of pericarditis which is inflammation (or fluid within) of the sac surrounding the heart.
  • Kidney involvement as evidenced by protein in the urine, or other abnormal findings in the urine that signify inflammation in the kidney such as cellular casts.
  • Nervous system involvement such as new onset seizures, or new psychiatric illness (psychosis).
  • In the blood, the “fighter” cells (the WBCs) are low on at least 2 occasions, or evidence of red blood cell destruction (hemolytic anemia), or platelets (thrombocytopenia).
  • Immune system disorder as evidenced by signs that there exist antibodies to components of the bodily cells that should not have antibodies against them.  Antibodies are produced by our immune system when it “sees” something that it wants to *mark* as an intruder and should be destroyed.  If antibodies exist for components in our body that are not ‘intruders’, that is a sign that the immune system has malfunctioned.  Examples that signify lupus include:  Anti-DNA antibodies, Antinuclear antibody, Anti-Sm (antibody to a nuclear component) or antibodies to phospholipids (phospholipids make up our cell membranes).  So you can see, if there is evidence that these important tissues have been ‘marked’ by our immune system as intruders to be destroyed, what a problem that could be.

So practically, what happens to you?  Well, that all depends on which part of your body the immune system is attacking.  Could be generalized fatigue and muscle weakness.  Could be psychosis and new seizures.  Could be heart attacks and strokes.  Could be joint pain and swelling, anemia, kidney failure, bleeding disorders, recurrent miscarriages or infertility, skin rashes, shortness of breath and cough, blood clots, chest pain, headaches, fever…just about anything!

Likewise, your body systems, laboratory tests, x-rays, ultrasounds, and physical findings will depend on which systems are being affected.  Many lab tests and radiographs are necessary to make the diagnosis since there are many diseases that mimic SLE that must be ruled-out in order to make the diagnosis of lupus.  So your doctor will do *many* tests and probably perform various procedures, and it’ll take longer than it seems like it should for an answer to be recognized.

Treatment for SLE includes treating any emergent issues such as heart attacks and strokes as they are usually treated.  An infection will need to be ruled out.  Referral to a rheumatologist is indicated.  SLE has no cure, but there are common medications used to help alleviate the destruction.  These include NSAIDS (non-steroidal anti-inflammatory drugs) such as aspirin.  Steroids are commonly used, as are cytotoxic drugs (which are used to decrease the power of the immune system).  These have the undesirable effect of lowering immunity overall making the patient more susceptible to infections.  Antimalarial and other specialized drugs are also used.

Things that you can do if you have lupus and want to stay as healthy as you possibly can include:

  • As mentioned, stop smoking.  Smokers have more severe disease, more exacerbations, and overall do not do as well.
  • Limit your sun exposure, but don’t eliminate it completely.  You may experience photosensitivity when exposed to the sun, but the sun is an important, nourishing component in our lives.  So you must balance exposure with avoidance.  This may be accomplished with the help of SPF 15 sunblock
  • Consider yearly vaccinations for flu and pneumococcus – especially if your lupus involves your lungs.
  • Eat well.  Drink plenty of water.  Avoid foods high in sugar and high-fructose corn syrup.  The healthier you can be overall, the longer your lupus will stay under control.
  • Take supplemental vitamins and minerals, especially vitamin D.  Limited sun exposure, coupled with underlying kidney disease may result in deficiency in this vitamin particularly.
  • Stay active.  If you become inactive you stamina will decrease, you muscles will become ‘soft’ and your fatigue and weakness will worsen.
  • Maintain a positive attitude.  Mentally if you are able to picture a healthy you and you focus on that goal, you will experience more healthy days than you would otherwise.  Control your thoughts, and stay focused on productive positive thoughts to attract into your life the great health you desire.

Prognosis: People with lupus are living longer.  The most common cause of death in young lupus patients is infection.  As patients approach 40 years old, the cause of death due to vascular diseases (such as heart attacks and strokes) increase and this category of patients are 52x more likely to suffer a heart attack than women without lupus.  Overall, 15 year survival rate is about 80% in America (with slightly lower numbers in Asia and Africa).  This means that of 100 people diagnosed with SLE, in 15 years, we can expect that 80% of those people will still be alive.  In 1950, the 4 year survival was 50% - meaning that half of people with SLE were dead in 4 years back then.  So with proper education, a healthy lifestyle, and treatment compliance, you can expect to have a great quality of life with lupus.