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Unless you have lupus yourself, there’s a good chance your understanding of this autoimmune disorder is limited. Coupled with plenty of misinformation and the lack of clear advice, living with this condition can be frustrating, as well as painful. Raising the awareness of this disease by sharing the facts is one step toward more understanding and support for those who live with it on a daily basis. In the long run, we hope that with understanding comes an increased push for more research that could lead to a cure. In the meantime, here are ten surprising facts you probably didn’t know about lupus. And when you’re done reading them, you’ll be all the wiser to spread the news.
1. There are four types of Lupus.
First of all, lupus isn’t just a single disease. Much like diabetes, lupus as “types” – four, in fact.
a. Systemic Lupus Erythematosus (SLE)– This is the type of lupus most people are aware of because it is both the most common and the most serious. It hits the body from a systemic standpoint, affecting everything from the skin to internal organs such as kidneys, lungs, and blood. How the symptoms present, however, can range from mild to severe.
b. Lupus Discoid – This type only affects the skin and causes rashes most commonly found on the face, neck, and scalp. While they can look and feel painful, this type of lupus does not go deeper in affecting the internal organs. However, 10% of lupus discoid patients will go on to develop systemic lupus.
c. Drug-induced Lupus – From an outsider’s standpoint, this form of lupus can look like systemic lupus as it affects internal organs and all aspects of the body. However, the symptoms will generally disappear within six months of the patient finishing the course of medication at its root.
d. Neonatal Lupus – While very rare, this type occurs when a baby who is born to a mother with lupus also develops lupus. However, most mothers with lupus are able to have normal pregnancies and their babies are born totally healthy.
2. Women of color get Lupus more than any other group.
While women in general make up more than 90% of all lupus diagnoses,
women of color are diagnosed two to three times more frequently than Caucasian women.
3. Lupus isn’t contagious.
While little is still known about lupus, one thing is for sure: you can’t “catch” lupus from someone else. This auto-immune disease is triggered inside the body, and while the specific triggers have yet to be determined, it’s safe to say it’s not contagious, nor sexually transmitted.
4. Lupus looks like other diseases.
The way this autoimmune disorder affects one person can be completely different for another. However, it can affect, to varying degrees, any part of the body. Because of this, it can mimic the symptoms of other diseases such as rheumatoid arthritis or fibromyalgia. It can also cause inflammation of the brain, kidneys, heart, lungs, and many other symptoms. Part of the problem also lies in the fact that 1 in 3 lupus patients actually suffer from multiple autoimmune diseases.
5. Lupus can be hard to diagnose.
According to the Lupus Foundation, it takes people an average of
six years from the onset of symptoms to getting their lupus diagnosis. During that duration, 55% of them ended up seeing four or more doctors to get there. Part of the reason for this delay stems from the way lupus can look like so many other diseases, as previously mentioned.
6. Lupus can affect different people differently.
We discussed the four different types of lupus, but how it affects each person can be different as well. For example, two people diagnosed with systemic lupus might have completely different symptoms. One might be dealing with brain fog and memory issues, while the other can be dealing with kidneys shutting down. It’s the same disease, but completely different presentation of symptoms. In addition, even if the symptoms were the same, the severity can range from mild to severe as well.
7. Depression happens often with Lupus.
Living with a chronic illness just on its own can be a struggle. However, many people living with lupus find there is a stigma associated with the diagnosis, mainly due to misinformation. Even when friends or family want to be supportive, they often have no idea what the other person is going through. What often makes it even harder is the fact that many lupus patients don’t “look sick,” which only continues the misconceptions out there. When all of this is combined with the struggle of actually living with the disease, it’s not surprising to learn that
depression rates are high. One of the best ways friends and family members can support their loved ones is to treat them with compassion and understanding to the best of their ability.
8. Lupus patients are at higher risk for other illnesses.
On its own, lupus isn’t a fatal disease, but the way it affects the body can quickly become life-threatening, if not dealt with. Lupus patients are at risk for many other medical maladies from renal disease, heart attack and stroke, high blood pressure, and more. It’s best to get a diagnosis quickly and be monitored for other areas that could be affected based on how symptoms present for the individual.
9. Lupus has no cause or cure.
Lupus is a mysterious illness in many respects. There is no known cause or cure for the disease. While the risk of developing lupus goes up if you have a relative who has been diagnosed, in and of itself, it is not a hereditary disease. Until the exact triggers for lupus can be sussed out, developing a proper treatment plan or cure is nearly impossible.
10. Treatments for Lupus are limited.
Because there are still questions up in the air about lupus and what triggers it, finding a treatment has proved challenging. Right now, lupus is mainly treated with NSAIDs, corticosteroids, and other immune system suppressants like hydroxychloroquine. A recent study found that nearly 1 in 3 patients with lupus
use prescription opioids to control pain. A new lupus medication approved in 2017 has shown some promise—
Benlysta. Produced by GSK, this self-injection treatment is available in our online pharmacy, but it’s available for local pick-up only and has the tendency to go in and out of availability.
Lupus affects more than 1.5 million Americans, and many more worldwide. According to the Lupus Foundation, it’s believed 10-15% of people with this disease will die prematurely due to complications of the disease. The best way to avoid this is by spreading the facts about this invisible disease. Hopefully now you can say you’re a little more knowledgeable on the subject than when you began and can help spread the word on what lupus is—and isn’t.
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