Lupus is an autoimmune disease accompanied by
chronic widespread inflammation — a disease that has proven in the
past to be fairly difficult to understand and control. There are several
types of lupus, with systemic lupus erythematosus (SLE) being the
most common form, and treatment is based on each individual’s unique case
The word lupus means “wolf” in Latin, and erythema
is a Greek word for “blush.” Since lupus is often accompanied by a characteristic
rash on the face, the name may derive from a physician who thought it looked like
a wolf bite or wolf fur — at least, that is a common story! But the rash on
the face is better known today as a “butterfly rash,” as it extends
over nose on both sides of the cheeks in the shape of a butterfly. The types of
the disease can range from just the skin rash to a much more serious manifestation
of systemic inflammation that damages major organs, most often the kidneys
Types of lupus
- Systemic lupus erythematosus (SLE)
- Discoid lupus erythematosus (DLE)
- Drug-induced lupus
- Neonatal lupus
For more information on the similarities and differences between types of lupus,
Lupus Foundation of America website.
The good news is that while the incidence of milder stages of the disease has increased
dramatically (it’s unclear why), the late stages have decreased. For many
lupus patients, the symptoms of lupus are uncomfortable, but manageable.
The exact causes of lupus are still unknown to us, though at least two dozen genes
have been found to contribute to the disease, as do multiple environmental factors.
In the US, approximately 80–90% of lupus cases are women, making lupus about eight
times more common in women than in men. Certain ethnic groups are more predisposed
toward it, and rates of lupus can vary depending on where you live as well.
Lupus symptoms and diagnosis
Not everyone with lupus has the same symptoms, and one of the most heartbreaking
and aggravating aspects of lupus is that since the early symptoms can appear “mild”
to a doctor or healthcare practitioner, women with lupus are often labeled as “chronic
complainers” and allowed to get sicker before they receive their diagnosis.
We always shake our head at this — not only because women with a genuine illness
that can be treated aren’t being taken seriously enough by their
doctors, but also because not listening to a patient’s concerns can have dangerous
consequences. And it just doesn’t have to be this way.
Unfortunately, there is no simple diagnostic test for lupus. To be given an official
diagnosis of lupus, you must meet 4 of 11 criteria:
- Face rash over the bridge of the nose and spreading across the cheeks
- Scaly rash anywhere on the body
- Any rash that appears after exposure to the sun
- Painless sores or ulcers in the mouth
- Any pain, stiffness or swelling in multiple joints of the body
- Swelling of the linings around the lungs or the heart
- Kidney disease
- Any neurological disorder, such as seizures or psychosis
- Low blood counts, such as low red blood count, low platelet count, or a low white
- Positive anti-nuclear antibody tests, which indicate autoimmune disease
- Other positive blood tests that may indicate an autoimmune disease, such as a positive
double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid
antibody test or false-positive syphilis test
As you can see from the list, there are several blood tests that you can get, but
many of the tests can come back as “normal,” even when you know things
are not 100% right in your health — one reason lupus is often misdiagnosed.
However, it is important to get the tests to know where you stand at that moment,
and to rule out other problems.
At Women's Health Network, we recommend that each woman be her own best health advocate
— for women with lupus, or who are entering
menopause, you can begin by conducting a few interviews with different healthcare
professionals. Rather than trying to remember everything off the top of your head,
you can try keeping a journal of your symptoms, and bringing it with you to appointments.
Try to be as specific as possible, and include the frequency and/or dates on which
your flares or symptoms appear. That way, you and your provider can both begin the
process of finding the right path for managing your symptoms or flare-ups, and returning
your body to a more natural, balanced state.
Focus on feeling better
If we could say just one thing to a woman newly diagnosed with lupus, it’s
this: take a moment and set aside the fear and concern about the diagnosis itself.
Concentrate on reducing inflammation, and managing your symptoms inch by inch, or
one at a time. Through treating each smaller piece or factor, you can achieve the
broader, more complete balance to your life again.
Although there is no cure for lupus, women can manage their symptoms and prevent
flare-ups by controlling inflammation — and for this, there are several natural
strategies to try. In other words, it might help to step away from the word “diagnosis”
for a second, just in the same way women at midlife can step away from the word
“menopause.” Instead, take a few minutes and think about your symptoms
as separate from a designated condition if you can. When we look at our symptoms
instead of the diagnosis, then we’re going to figure out what we need to do
to ease those symptoms — whether it’s detoxification, soothing digestive
imbalance, or above all quieting inflammation — addressing any of these factors
(or all!) can help you start to find relief. Because in the end, it doesn’t
matter whether you’re a “wolf” or a “butterfly” —
it matters only that you feel better!
1 NIH | DHHS. National Institute of Arthritis and Musculoskeletal and
Skin Diseases. 2009. Handout on health: Systemic lupus erythematosis. URL: >http://www.niams.nih.gov/Health_Info/Lupus/default.asp
2 Lupus Foundation of America. 2008. Ask the experts: Summary 2007 Lupus
Now magazine. URL: http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=884&zoneid=67
3 Moser, K., et al. 2009. Recent insights into the genetic basis of systemic
lupus erythematosus. Review. Genes Immun., 10, 373–379. URL: http://www.nature.com/gene/journal/v10/n5/full/gene200939a.html
4 Patavino, T., & Brady, D. 2001. Natural medicine and nutritional
therapy as an alternative treatment in systemic lupus erythematosus. Altern. Med.
Rev., 6 (5), 460–471. URL (PDF): http://www.thorne.com/altmedrev/.fulltext/6/5/460.pdf
National Women’s Health Information Center. US Department of Health
and Human Services, Office on Women’s Health. 2009. Lupus. Frequently asked questions.
URL (PDF): http://www.womenshealth.gov/faq/lupus.pdf (accessed 06.08.2009).
American Autoimmune Related Diseases Association, Inc. [No publication
date.] Autoimmunity: A major women’s health issue. URL: http://www.aarda.org/women_and_autoimmunity.php
5 Shiel, W. 2005. Women, hormones, and lupus. Doctors on Health, 3.
URL (audio): http://www.medicinenet.com/script/main/art.asp?articlekey=47901 (accessed
6 Patavino, T., & Brady, D. 2001.
7 Mayo Clinic staff. 2008. Lupus. Tests and diagnosis. URL: http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=tests-and-diagnosis
Visit the New York Times
Patient Voices on Lupus to read of others’ experiences with lupus and join in the
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