Lupus may present itself in different ways and virtually no two people will have the exact same symptoms nor the exact same treatment plans. It’s important for all of us – whether or not we have lupus – to get beyond our first impression of this chronic illness and get to know it on a deeper level.
Lupus is an incredibly complex illness and because of this complexity it is often illusive. It is easily mistaken for a myriad of other illnesses making it difficult to diagnose. What is more, lupus affects each individual in a multitude of different ways making it all the more confusing. So, it is important to understand as many of these different aspects of the disease as possible.
Knowing a few facts may give us all a greater understanding of the seriousness of this chronic illness, bringing greater attention and awareness as to why we must all continue to support the fight for answers and the fight for a cure. Through knowledge we gain power.
Five Facts About Lupus
Fact #1: There are five types of lupus:
- Systemic lupus erythematosus (SLE) is the most common form of lupus, and therefore the term “SLE” is often used synonymously with the term “lupus”. SLE can affect many organs and systems of the body – including kidneys and the cardiovascular system – as it causes chronic inflammation and often pain.
- Chronic cutaneous lupus erythematosus is lupus that affects the skin and can often occur in individuals who do not have SLE (though 5% of these individuals may develop SLE later in life). There are several types of cutaneous lupus including discoid lupus erythematosus (DLE), acute cutaneous lupus (ACLE), subacute cutaneous lupus erythematosus (SCLE) and tumid lupus.
- Drug-induced lupus erythematosus presents symptoms similar to SLE – but the caveat is that the affected individual does not actually have lupus in the normal sense. Instead, the individual has taken a medication that basically causes symptoms that mimic SLE, and once the individual stops taking the medication, the symptoms subside. According to Johns Hopkins, these medications can include hydralazine and methyldopa which are used to treat high blood pressure, procainamide which is used to treat heart conditions, minocycline which is used to treat acne, and anti-TNF which is used to treat rheumatoid arthritis.
- Neonatal lupus erythematosus affects babies and most often, these babies are born to women who do not have lupus. Neonatal lupus erythematosus presents on the skin and usually subsides on its own without treatment – though 1-2% of these babies may develop a congenital heart block requiring a pacemaker in order to lead a healthy life.
- Childhood lupus affects children in the same manner it does adults though kidney disease occurs about two times more in children with lupus than adults with lupus and therefore requires much more aggressive treatment and close monitoring by a healthcare professional.
Fact #2: Lupus has no known cause or cure. As of the writing of this article, no causes or cures for lupus have been discovered though researchers and experts are ardently working to find both.
The Mayo Clinic suggest that some triggers for lupus may include the environment and genetics as well as sun exposure, infection, and medications (usually the effects are temporary, as noted earlier). Risk factors for developing lupus include your sex (lupus is more common in women), your age (lupus usually occurs during child-bearing years post-puberty), and your ethnicity (lupus is more common in African-Americans, Hispanics, and Asian-Americans).
While there is no cure for lupus, many medications are used to effectively manage symptoms. According to the Johns Hopkins Lupus Center, types of medications include NSAIDs for inflammation and pain, anti-malarial drugs like Plaquenil, corticosteroids (cortisone) that alleviate the discomfort of inflammation and biologics, like Benlysta that target the immune system itself. A more detailed account of these medications can be found here.
Fact #3: 5 million people have lupus – and most of them are women. According to Lupus News Today, as of 2017, 1.5 million Americans have lupus, which means that about one in every 250 individuals will develop lupus at some point in their life. Because lupus is also known as the “great imitator” – mimicking any one of hundreds of other diseases – those numbers could actually be much higher. Out of that 1.5 million that we do know of, approximately 90% of individuals with lupus are women in their child-bearing years. Nancy Walsh of MedPage Today states that the female hormone estrogen plays a significant role in the development of autoimmune diseases such as lupus. The increase in estrogen may explain the onset of lupus at or around puberty in women and why few women are diagnosed after menopause when estrogen levels severely drop.
Fact #4) Men do get lupus. Though less common in men, roughly 10% of individuals diagnosed with lupus are men, and often will suffer more severe symptoms than women. Jeri Jewett-Tennant of VeryWell Health lists the symptoms that are more common to men than women including:
- Renal (kidney) disease
- Discoid lupus
- Hemolytic anemia (the destruction of red blood cells)
- Lupus anticoagulant (blood that doesn’t want to clot)
Kate Bayless of Prevention acknowledges that men are also more apt to develop neurological disease, serositis (inflammation of the linings of the organs) and even drug-induced lupus. While all of these symptoms are more prevalent in men, men may also experience the same symptoms as women who have lupus.
If increased estrogen levels may be to blame for lupus in women, what causes men to get the disease? Jewett-Tennant writes that it could possibly be decreased levels of androgen (testosterone) that are to blame for the development of lupus in men. Even boys are more prone to develop childhood lupus than girls, and much like their adult male counterparts, the symptoms can occur to a greater, more intense degree. While the number of cases diagnosed in men is significantly lower than in women, men and their healthcare practitioners should never lose sight of lupus.
Fact #5: Certain ethnicities have an increased risk for developing lupus – and it isn’t just about genetics. African-American, Hispanic, American Indian/Alaskan-native, and Asian-American men and women are at greater risk for developing lupus than other ethnicities. While there may be some genetic predictors that explain the increased risk such positive anti-dsDNA antibodies in Hispanics and HLA-DQB1*0201 antibodies in African-Americans, just as much of the risk may lie in socio-economic factors as well.
In 1994, researchers from the University of Alabama at Birmingham and The University of Texas Houston’s Health Science Center established the Lupus in Minorities: Nature vs. Nurture cohort (LUMINA) which took a look at the relationship between ethnicity and autoimmune disease, specifically lupus. The researchers were particularly interested in how socio-economic and demographic factors affected these individuals and their lupus symptoms and treatment. The cohort of almost 600 individuals included individuals of Hispanic descent from Texas and Puerto Rico, African-Americans and European Americans. The individuals were mostly women.
The researchers followed the cohort for 10 years and in 2004 published a follow-up study. They determined that “patients from ethnic minorities have worse outcomes (disease activity, damage) and highlight the importance of considering the inclusion of socioeconomic – demographic factors (poverty, health insurance, access to health care) in lupus studies.” For example, the Hispanic cohort participants from Texas had worse outcomes than the Hispanic cohort participants in Puerto Rico because Puerto Ricans “have the largest portion of publicly funded health insurance (99%), whereas a large proportion of Hispanics from Texas have no health insurance (49%).” It would be interesting to see if the Affordable Care Act (ACA) has had any impact on these numbers.
Lupus is complex and can take on the face of many other illnesses, making it difficult to diagnose, treat and cure. Having a more complete picture of the “great imitator” may not only help us get better acquainted with lupus, but may also help us develop greater compassion for all who live daily with its symptoms – as well as for those who try to treat it and are working tirelessly for a cure!
Alarcon, G., McGwin, G., Reveille, J. & Uribe, A. (2004). What have we learned from a 10-year experience with the LUMINA (Lupus in minorities: Nature vs. nurture) cohort? Where are we heading? Autoimmunity Reviews. doi:10.1016/j.autrev.2003.11.005
Bayless, K. (2015). 9 things you need to know about lupus. Retrieved from https://www.prevention.com/health/a20486651/things-you-didnt-know-about-lupus/
Duarte, M. (2017). Statistics everyone should know about lupus. Retrieved from https://lupusnewstoday.com/2017/07/10/statistics-everyone-know-lupus/
Lupus. (n.d.). Retrieved from https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
Lupus medications and treatment options. (2019). Retrieved from https://www.hopkinslupus.org/lupus-treatment/lupus-medications/
Systemic lupus erythematosus. (2018). Retrieved from https://www.cdc.gov/lupus/facts/detailed.html#risk
Tennant-Jewett, J. (2018). How lupus affects men. Retrieved from https://www.verywellhealth.com/how-lupus-affects-men-2249959
Types of lupus. (2019). Retrieved from https://www.hopkinslupus.org/lupus-info/types-lupus/
Walsh, N. (2018). Estrogen and lupus: Exploring the link – Unique relationship identified between SLE, estrogen, and toll-like receptors. Retrieved from
Author: Liz Heintz
Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.
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