Lupus is a difficult disease to research and understand, and it is still heavily misunderstood. What we do know is that lupus is an autoimmune disorder, which means that the body’s own immune system is misbehaving and attacking the body, causing inflammation and damage to the body. You can read more about the immune system here.
Lupus can manifest as a skin disease (cutaneous lupus erythematosus or CLE,) a kidney disease (lupus nephritis or LN,) or can affect the whole body, internal organs and all (systemic lupus erythematosus or SLE.) The symptoms can change in intensity with exposure to a trigger (also known as flares,) and, in some cases, can be alleviated with lifestyle changes like diet and exercise.
We also know that lupus itself is not usually fatal but can cause complications or exacerbate other conditions. In the old days, there was no treatment for lupus. Folk remedies such as willow bark (a precursor to aspirin) helped with pain, heat and cold helped with swelling, lesions on the face could be washed and kept clean, and people could avoid triggers that they identified.
However, with modern medicine, we can both better recognize lupus and its wide range of symptoms and push it into remission. More tools, medical and otherwise, are available for Lupus Warriors to live their best lives, and more are on the way. It may seem like it isn’t enough, but we’ve come a long way.
Why is it Called Lupus?
The first description of lupus was from the ancient Greek scholar Hippocrates recorded it as “herpes esthiomenos” in 460-375 BCE.
In those days, they had little knowledge of the causes of disease, so Hippocrates defined “Lupus” as was ulcerations that disfigured the face or legs, as opposed to “herpes,” which would appear in other parts of the body. It was called lupus, latin for wolf, because the skin lesions could be so severe that it looked like the patients “were ravaged by wolves.”
These days, we can recognize these symptoms as possibly a form of cutaneous or discoid lupus that was not cared for properly and became destructive.
However, the people involved may also have had other diseases that disfigured them, possibly taking advantage of their compromised immune systems or acting on their own. All of these symptoms could have been lumped under “lupus” or “herpes,” but we may never know the whole truth, and Hippocrates didn’t know better. Still, he gathered folk remedies and disease knowledge into one place, giving modern medicine a starting point.
What is Erythematosus?
In 1846 and 1851, doctors such as French dermatologist Cazenave recognized the infamous malar or “butterfly” rash as a symptom of lupus and first used the term lupus erythematosus (as lupus érythémateux) to describe the disease.
Erythematosus comes from the Greek word erythros, which roughly translates out to “red,” and refers to the red rashes and inflamed lesions on the skin in SLE and CLE.
In 1872, a growing knowledge of the human body enabled them to look further than skin-deep and recognize that systemic lupus existed. They split the definition of the disease into systemic (SLE) and discoid lupus (CLE.) At this point, it was recognized that it was more than a disfiguring condition – SLE was now understood to potentially lead to fatal complications. You can read more about the mortality rates of lupus here.
At this time, however, doctors and researchers did not know the origins or lupus, the causes of disease, or how to treat it. They did recognize that quinine, an antimalarial medicine produced from the bark of the South American cinchona tree, had an effect on lupus as well.
First Treatments for Lupus
It took until the 19th and 20th centuries to truly understand the nature of these multifaceted diseases. People began to understand the causes of disease, and how to prevent bacteria and viruses from spreading. They also realized that some diseases are autoimmune and not caused by outside organisms. This was the turning point of medicine, with the advent of the “miracle drugs” of antibiotics in the 1940s and ‘50s. These “miracle drugs” made immunosuppressants usable, since they could treat infections that the body was no longer able to fight off. You can read more about preventing infections and lupus here.
As lupus was recognized as an autoimmune disease and doctors better understood the immune system, medicine evolved to match. It is here that the “gold standard” of glucocorticoids began to be used. You can read more about common lupus drugs here, which had their start in this era. Hydroxychloroquine was also developed and proved to be superior to quinine. You can read more about hydroxychloroquine here.
The 21st century has deepened our understanding of lupus, and the internet allows people with lupus around the world to communicate with each other and come together as a community. The internet has shown huge potential to broaden awareness of lupus and other chronic illnesses through narratives such as the “spoon theory.”
There is also a greater understanding of how environmental conditions affect health, and alternative medicine such as acupuncture, mindfulness, and stress-relieving therapies are gaining traction and appreciation in the medical world. You can read more about mindfulness here. Diet and its effect on health is better understood, and you can read more about diet and lupus here.
There are also many biologic and targeted treatments, lab-created antibodies that help the body “clean up” the autoantibodies that cause the trouble in the first place. More research is in the works, and progress continues at a steady pace.
In other words, the future for people with lupus is bright! Don’t forget your sun protection!
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