Lupus is a complex, ongoing, and potentially fatal autoimmune disease, that commonly affects the joints, skin, kidneys, lungs, brain, and blood vessels, causing inflammation, pain and tissue damage. It is one of the most misunderstood diseases by the public, and one of the most mysterious diseases known to the medical community.
Even in 2019, there are still misconceptions and misunderstandings about the illness.
Due to this reason, More Than Lupus decided to dedicate an entire blog with the sole purpose of debunking the most common falsehoods about lupus.
Here are our TOP FIVE Most Understood Things About Lupus:
NUMBER 1: “It is rare.”
Although two-thirds of Americans know little or nothing about the disease, lupus is not classified as a “rare disease” in the United States. Hundreds of thousands of Americans have it, and millions suffer with it - worldwide. Statistically, it more common than cystic fibrosis, muscular dystrophy, and multiple sclerosis - combined. However, is it mistakenly thought of as a “rare disease” because of its mysterious heterogeneity and unusual ways the disease presents itself. Lupus is considered a widespread disease; but, the general public knows so little about it because lupus awareness lags behind so many other illnesses (that are ironically less common). Moreover, studies conducted in the late 1980’s showed that lupus was even more common than previously realized, particularly in women after the American College of Rheumatology revised their clinical and immunologic lupus criteria.
NUMBER 2: “It is a new disease.”
Lupus is not a 21st century disease. Nor is it a 20th century disease. In 1856, Austrian dermatologist Ferdinand von Hebra published the first illustrations of lupus erythematosus in the Atlas of Skin Diseases. Let’s go back even further, shall we? A Peruvian mummy (dating around 890 AD) of a 14 year old girl who was believed to have lupus has been documented and studied, making lupus a disease that has been around since the days of Vikings invading North America and Charlemagne's rule of the Roman Empire.
Ironically, the 1920’s began what researchers deem the “modern age of lupus.” In this period, there were many developments in research to the cause and treatment of SLE and discoid lupus. Particularly, in 1923, when significant medical findings led to our current understanding and classification of the disease. One of the biggest events of the modern era happened in 1948 when Mayo Clinic hematologist, Malcolm Hargraves and his colleagues, discovered the first lupus erythematosus cell. In 1950 the Nobel Prize was awarded to scientists for the discovery of the effects of the use of cortisone/corticosteroids and in 1951, the antimalarial drug, quinacrine, was used for the treatment of DLE. This lead to further realization that chloroquine and hydroxychloroquine (plaquenil) were highly useful to treat various forms of the disease.
In 1971, the first systemic lupus erythematosus classification criteria was established by the American College of Rheumatology. This might be one of the reasons people think lupus has only been around for half a century. After the classification, more people were diagnosed correctly with lupus, after being treated for other incorrect diseases.
These historical facts drive home the point that lupus is indeed a condition that has been around literally since the dark ages.
NUMBER 3: “It is contagious.”
Yes, let me sneeze on you and let my infected antibodies infect yours! Come on, that sounds like an episode of the Walking Dead, and is simply not the case with lupus! Lupus is an autoimmune disease. This means that the immune system cannot tell the difference between the healthy cells and the harmful cells in the body. With lupus, the immune system goes into hyper-drive and mistakenly attacks and destroys the healthy cells by making antibodies that target the body’s tissue.
So the next time you are sharing an elevator with someone who knows you have lupus and they take a few steps back, make sure to get all up in their grill. Just kidding. But, it is an opportunity for you to spread lupus awareness, not germs! AND explain how your immune system works and debunk any unconscious incompetence on their part.
NUMBER 4: “It only affects women.”
Believe it or not, lupus is not a woman’s disease. However, it disproportionately affects women. But, let’s clarify. Men get lupus. Boys get lupus. Teenage boys get lupus and it can be very severe. Lupus or SLE may present similarly in men and women; however, men tend to suffer from these symptoms more commonly:
Renal (kidney) disease, AKA lupus nephritis
NUMBER 5:“It goes away.”
Unfortunately, not true.
At times, lupus patients may have periods with few or no symptoms, commonly called “remission.” Some doctors refer to a period of quiet disease activity as disease “quiescence.” Sadly, there is still no cure for lupus; and many people live with aspects of the illness their entire lives. 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. Also, the more a patient complies with doctors orders and takes his or her medication properly, the better the patient outcome.
We hope this article is helpful to you and is a tool for you to share with your friends and family to help spread the truth about lupus! For more information about lupus, please visit morethanlupus.com!
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2019.