The chronic illness lupus is a health problem that has, slowly but surely, been coming out of the shadows in recent years. May is Lupus Awareness Month, and people are more aware of the complex disorder's existence today than they've ever been before, largely due to celebrities like Selena Gomez who've been open about their struggles with the disease — including the fact that it can cause mental health issues like depression.
But while many know about the existence of lupus, few outside the world of actual sufferers and their friends and family know much about the ways the disorder impacts sufferers, which is a big problem; it's estimated that 1.5 million Americans currently have lupus (around 90 percent of them will be women), and that fact that it often takes years for lupus to be properly diagnosed makes it a major women's health issue.
There's much about lupus that remains opaque; while we've been aware of it since the time of the ancient Greeks and are now more familiar than ever with its mechanisms and how it works, the particularities of how it's triggered, why it occurs in certain people, and how to treat it remain challenging.
Knowing about lupus, in all its complexity and many questions, is undoubtedly a boon to future generations of young women, who shouldn't have to struggle for ages to get a diagnosis that works.
Lupus Is An Immune Disease, But We Don't Know What Causes It
Lupus — or the variety of diseases that are collectively known as lupus — is a disease of the autoimmune system. A perfectly functioning human body's immune system protects against threats and infection using antibodies, and provokes responses from tissues that stimulate healing. In the case of lupus sufferers, the immune system goes haywire for reasons that remain unclear to researchers and sufferers, attacking the person's own tissues and causing internal damage and swelling. Doctors, the American College of Rheumatology notes, often call this a "loss of self-tolerance;" it's as if the body has begun to regard its own components as a threat.
Just as the autoimmune disorder itself remains a bit mysterious, so do its causes. Lupus appears to be triggered by various events experienced by people who may be genetically susceptible to it. The National Institute of Arthritis and Muscoskeletal and Skin Diseases lists a long series of potential triggers that have been investigated by scientists, including "sunlight, stress, hormones, cigarette smoke, certain drugs, and infectious agents such as viruses," particularly the Epstein-Barr virus. It is, however, still unknown whether or not genetic predisposition is absolutely necessary for developing lupus in the first place. Many people with the most severe kind of lupus, systemic lupus erythematosus, don't have any relatives with the same condition.
It's Most Common Among Women, Particularly Black & Asian Women
One of the most notable things about lupus is that it most commonly afflicts women, particularly women of childbearing age between 18 and 44, and disproportionately affects women of color. Nine times as many women as men have lupus, according to Arthritis Research UK, and that's an estimate based around actual diagnoses; there may be many more who don't actually know they have lupus, a problem I'll discuss shortly.
When it comes to susceptibility, the groups of women who are most affected by lupus are women of Chinese, African or Caribbean origin, while Latina and Native American women are also seen as more vulnerable. African-American women are three times more likely to have lupus than white women. Why? Science is not absolutely sure, but in some cases, it may be a consequence of social and racial inequalities and the increased stresses of poverty and discrimination.
There Are Several Different Kinds Of Lupus
The kind of lupus that often attracts headlines is the aforementioned systemic lupus erythematosus, in which the immune system attacks internal organs and tissues, from the joints to the kidneys. SLE sufferers have a huge range of symptoms that depend on what part or parts of the body their particular variety of lupus is targeting; they can experience everything from swollen joints to ulcers and seizures. However, there are other kinds of lupus, designated by the areas the immune system is focused on harming.
The most common form, known as cutaneous lupus, is based around the skin, and causes one of lupus's most evident and famous symptoms: huge red rashes across the cheeks and skin, thought by some to resemble a wolf's bite or facial markings. However, lupus sufferers can also have neonatal lupus, which is passed to infants with mothers who have SLE and can cause severe heart problems, or drug-induced lupus, a rare condition that results from a severe response to medications and is generally temporary.
It's Often Misdiagnosed Because Of Its Many Different Symptoms
Lupus is one of the most misdiagnosed illnesses in the world, purely because its manifestations in every person are so unique; the symptoms of lupus can often closely resemble other illnesses, which means people can be put in a cycle of pain, fatigue and improper medication for years. Even though it's more common than leukemia or multiple sclerosis, sufferers are still very likely to be told they have another illness before getting a correct disorder.
The huge range of symptoms accounts for some of this confusion. While a sense of utter fatigue and low grade fevers or inflammation are common lupus symptoms, different lupus varieties target different specific organs, producing a wide variety of results — from increased fluid around the lungs to hepatitis, arthritis, painful joints and extremities, and kidney issues that create black urine.
And that's only the stuff that can come from SLE. People with lupus variants that affect the central nervous system have a particularly tricky time because lupus can induce mood changes, memory issues, strokes, depression and other problems. There's also the overlapping disorder problem: lupus can cause problems that require individual treatment on their own terms, like thyroid issues, and can distract from the underlying diagnosis.
We've Known About Its Existence For Thousands Of Years
While popular awareness of lupus may be new, the disorder itself is not. Though the diagnosis "lupus" itself is usually attributed to the 13th century physician Rogerius, it seems that ancient Greek medical thinkers were aware of the disorder, even if they weren't able to articulate its causes or how it worked. Hippocrates described a very similar-sounding illness, calling it "gnawing dermatosis" for its effects on the skin. However, it wasn't until the late 19th century that Viennese doctor Moriz Kaposi understood and taught others that lupus, in some cases, went beyond skin-deep symptoms and could involve entire systems of the body.
From there, breakthroughs came thick and fast. In the 1890s, the Canadian doctor Sir William Osler noted that lupus usually flared up repeatedly over a lifelong pattern, and in the 1940s, it was discovered to be an autoimmune disease that could be diagnosed through testing the body's antibody levels. Oddly enough, it also solved another medical conundrum: people who'd keep getting false-positive tests for syphilis. Many of them, it turned out, actually had lupus.
Lupus Is Lifelong And Treatment Is Longterm
Lupus is not a one-off problem. While it tends to manifest itself before the age of 50, it then sticks around, flaring up in response to stimuli we're still not entirely sure about. It's what's known as an "episodic illness," and the SLE variety can also start affecting different organs at different times, putting another spanner in the works of proper diagnosis.
The process for getting diagnosed and put onto a treatment program is, unsurprisingly, lengthy and thorough. The Mayo Clinic lists tests as diverse as white and red blood cell counts, analysis of your urine, and a specific procedure known as an antinuclear antibody test, in which levels of those particular types of antibodies are measured in your system. Antinuclear antibodies are ones spawned by autoimmune diseases to attack your own system, and a higher level of them than usual often indicates that there may be an issue with your immune system, though it doesn't specifically mean lupus.
Once armed with a lupus diagnosis, things don't necessarily get easier for sufferers; most treatments for lupus aim at reducing the symptoms, as an overall cure is still not viable. Anti-malarial medications, interestingly enough, have been shown to be very effective in managing SLE, but the range of medications on hand to help with inflammation and deal with damaged tissue throughout your body are pretty wide. There's no one-size-fits-all treatment, alas.
New Treatments Are On The Horizon
The current range of options for serious lupus conditions often focus on impeding the immune system so that it stops attacking the body, leaving people vulnerable to things like infection and viruses. It's not a great system, and there are many scientists trying to develop less damaging, more effective treatments. Oddly enough, some of the most groundbreaking research on lupus treatments in the past 5 years have come from the Australian Monash University.
Monash scientists have highlighted two new ways they can help lupus sufferers. One is by knocking out the actions of a type of cell known as a B cell, which, if left unattended in lupus sufferers, produces the antibodies that go around attacking cells. If these cells are fiddled with, they stop producing the problematic antibodies, but keep the immune system intact.
The other treatment operates by boosting levels of an immune system protein called IL-2, which was originally meant as a cancer-buster but now looks to be the future of lupus treatment. (Cancer and lupus have had a weird intertwined history; in 2015, Yale scientists revealed they'd found a way to alter lupus antibodies to kill cancer cells.)
If you suspect you may have lupus, do your research, and be prepared to convince or even educate your GP; lupus is a fairly rare condition, and you may have to go through a lot of tests and guesswork before you arrive at a definitive diagnosis. But don't lose hope — new medical treatments are being developed regularly, and there are lupus support communities out there full of people who have been through what you're going through, and can help guide you through the roughest patches. Lupus is hard to deal with, but you are not on your own with this.