1) It is NOT Contagious
I repeat. LUPUS IS NOT CONTAGIOUS. Lupus is an autoimmune disease. This means that your immune system cannot tell the difference between the healthy cells and the harmful cells in your body. Your immune system goes into hyper-drive and mistakenly attacks and destroys the healthy cells by making antibodies that target the body’s tissue. What it does NOT mean is that if someone with lupus sneezes on you, his or her corrupt cells will travel into your body and destroy YOUR immune system. So you don’t have to take two steps back when someone tells you they have lupus. Feel free to share the elevator with them, they won’t turn you into a zombie. Or will they… (ominous chord)…
2) It is the Great Mimicker
Feeling tired, nauseous, and have overall malaise? You could have lupus! Or ten-thousand other conditions that can cause those exact symptoms. Because lupus symptoms can mimic those of so many other illnesses, it can be incredibly hard to diagnose. Thankfully, about 97% of people with lupus test positive for antinuclear antibodies at some point in their medical history, which can help point doctors in the right direction. With the ANA test, medical history, additional lab tests and physical exam, doctors are usually able to confirm lupus and discard other conditions that may have similar symptoms. For more tips on diagnosis, see our blog on diagnosing lupus and lupus tests.
3) It Affects Minority Women the Most
1.5 million Americans are afflicted by some form of lupus, while more than 5 million are known to have it worldwide. Of those affected, 90 percent of them are women and 80 percent are between the ages of 15 and 45. People of color are 2 to 3 more times likely to be diagnosed with lupus than Caucasians. African-American and Latina women tend to develop lupus earlier in life, experience greater disease involvement and have overall more complications than Caucasians. Researchers have not been able to completely identify why women of color are affected more, but have made some discoveries through targeted studies that it is more biological than socioeconomic. For more information on the study of nature vs. nurture in minority women with SLE, see this article, published by the journal Autoimmunity Reviews.
4) It Affects Everyone Differently
It is true, you can have lupus and look perfectly “normal” on the outside–which can be a blessing and a curse. Some people experience only internal symptoms of lupus like kidney, heart and lung issues. Some people experience only external symptoms of lupus like skin lesions, malar rash and hair loss (alopecia). It is almost impossible to find two lupus patients with the exact same symptoms. Moreover, it is unfair and illogical to compare two lupus patients. It is also unfair to judge someone who may not “look” ill. So, before anyone utters the words “But, you don’t look sick” to someone who is chronically ill, he/she should be forewarned that it is really invalidating, particularly if someone is in a flare and feels like road kill on the inside.
5) There is No Cure, But It Can Go Into Remission
At times, lupus patients may have periods with few or no symptoms, commonly called remissions. Some physicians are uncomfortable with the term “remission,” as lupus symptoms rarely disappear completely. You might hear your doctor refer to this period as “quiescence” which means “at rest.” However, at other times the patient may have debilitating disease activity with severe symptoms. Sadly, there is still no cure for lupus; however, 80 to 90% of people with lupus can live a normal lifespan. The earlier the diagnosis, the better the chances of managing the disease more successfully. Studies have shown that lupus patients who take plaquenil (or other anti-malarial drugs) outlive those who don’t. It is believed that it protects the vital organs from inflammation and infection. For more information on medications used to treat lupus, see our blog post on lupus treatments.
Author: Kelli Roseta
All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at firstname.lastname@example.org for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.
All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.