What is Lupus?
While on the surface, this may seem a simple question to answer, the very nature of lupus makes it, in fact, a very complicated one. There are some facts the medical and scientific communities can offer for certain about lupus and we hope this blog gives you the accurate information you need to understand this very complex and debilitating disease, as well as providing a tool to help share and spread awareness.
Definition of Lupus
Lupus (Systemic Lupus Erythematosus) is a widespread and chronic (lifelong) inflammatory autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissue and organs.
Lupus causes a wide variety of devastating symptoms. For more information on this topic, please read our blog Lupus Symptoms and Signs. Lupus can affect nearly every organ and system (see graphic on left) in the body with no predictability, causing widespread infections and inflammation.
A healthy immune system protects the body against viruses, bacteria, and other foreign materials. With an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissue. The immune system then makes antibodies directed against “self” and begins attacking healty tissue.
There are four types of lupus. They include:
- Discoid lupus erythematosus. This type affects the skin and is also known as cutaneous lupus.
- Drug-induced lupus erythematosus. Drug-induced lupus can occur as a side effect of some drugs, such as beta blockers, which are commonly used to treat heart disease and hypertension.
- Neonatal lupus erythematosus. This is a rare form of lupus in newborn babies, whose mothers have lupus, and can cause problems at birth or in rare cases, a serious heart defect.
- Systemic lupus erythematosus. Systemic lupus causes inflammation in multiple organs and body systems.
Here are some quick lupus facts:
- While lupus is not well known or understood, it is far more common in the US than better known diseases such as cystic fibrosis (approximately 30,000 affected), muscular dystrophy (approximately 30,000 affected), leukemia (appoximately 48,000 affected), and multiple sclerosis (approximately 350,000 affected). In sharp comparison, approximately 1.5 million people in the U.S. suffer with lupus.
- Lupus is one of America’s least recognized major diseases. While lupus is widespread, awareness and accurate knowledge about it lags decades behind many other illnesses.
- Without early diagnosis and treatment, lupus can be severely debilitating, even deadly.
- Lupus is a widespread and chronic autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissues and organs, including joints, kidneys, heart, lungs, brain, blood, and skin.
- More than five million people are known to be affected by lupus worldwide.
- Symptoms include fever, fatigue, loss of appetite, rashes, hair loss, swollen glands, sensitivity to light, chest, muscle and joint pain, ulcers in the mouth or nose, and others.
- Typical treatments include steroids, painkillers, and immunosuppressants, as well as behavior and diet changes. In March 2011, Benlysta became the first FDA-approved lupus drug treatment in over 50 years.
- Ninety percent of those afflicted are women between the ages of 15 and 45 and two-thirds of those are women of color.
- Lupus can lead to organ damage and failure. Serious conditions that can arise include kidney disease, pancreatitis, pleurisy, vasculitis, pericarditis, and cancer.
- Living a full life with lupus is possible, but doing so relies heavily on early diagnosis and consistent treatment.
- More than 16,000 Americans are diagnosed with lupus each year.
- There are many treatments for lupus’ symptoms, but there is no cure…yet!
Do we know what causes lupus?
First of all, it is important to know that lupus is not contagious. Secondly, it is a fact that even medical professionals and researchers cannot say for certain what causes lupus. Most of those in medical and research professions will agree that several factors might determine an individual’s likelihood to develop lupus.
- Genetics. While a family history of lupus does not mean an individual will get lupus, it can determine a person’s likelihood for the disease.
- Environment. Research is being conducted regarding environmental factors that may play a role in being a trigger for lupus. Exposure to UV light (photo-sensitivity), smoking, stress, or toxins may or may not be contributing factors.
- Hormones and Illness. Because of the fact that women in their childbearing years are the most common demographic afflicted with lupus, research is suggesting that higher levels of hormones, such as estrogen and progesterone, are linked to auto-immune diseases like lupus. People affected with viruses and bacteria, such as parvovirus, hepatitis C, or Epstein-Barr (EBV) may develop lupus, but a direct causal link has not been established.
- Medications. Some medications are suspected triggers of lupus and symptom flares, thus a subset of the disease. Drug-induced lupus is based on this theory. Often, once a patient with drug-induced lupus stops taking the medications suspected of inducing the lupus, the symptoms can decline rapidly.
- A Combination of Factors. Many in the medical and research fields believe that a combination of all the above listed factors is likely more susceptible to getting lupus, than a person with, perhaps, only one of the factors.
Because lupus can affect nearly every part of one’s anatomy, it is a difficult disease to diagnose, predict the progress of, and treat. Whether you or someone you care about have recently been diagnosed with lupus or have been living with lupus for many years, learning to understand and cope with such a potentially debilitating disease is not an easy task.
The ways in which this disease can physically and emotionally affect a person varies widely from patient to patient.
But one element that is consistent when coping with a chronic illness, like lupus, is the undeniable toll that it takes on the mind and body. With the right tools, support and education, a person can ultimately lead a positive and productive life with lupus. Lupus continues to remain a mystery to doctors, researchers and the general public. With continued research and education, one day we will understand better what causes this autoimmune disease to occur and hopefully find a cure.
Although there is currently no cure for lupus, today’s modern medications and treatments can be very effective in helping people with lupus live longer, healthier lives. The prognosis (or the prediction of the outcome of the disease) does depend a lot on the severity of each individual’s lupus. Those with milder disease activity, do tend to do extremely well and live a normal life expectancy, while those with severe internal organ involvement can still potentially die from the disease, especially if they do not receive timely and appropriate treatment.
Please help spread awareness by sharing this blog on your social media platforms. We would also love to hear your comments and suggestions for better ways to serve you, our lupus community. Together we can make a difference.
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*All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.