What is lupus?
Before we dive into what causes lupus, lets define the disease.
There are four types of lupus:
- 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.
Lupus is a chronic autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissues and organs, causing widespread infections and inflammation. Symptoms of lupus can include extreme fatigue, rashes, hair loss, cognitive dysfunction ( brain fog), severe muscle and joint pain, and ulcers in the mouth or nose, just to name a few. If left untreated or undiagnosed, lupus can lead to organ damage and failure and is potentially fatal. Lupus is one of America’s least recognized major diseases. While lupus is widespread, awareness and accurate knowledge lags decades behind many other illnesses. In this blog, we will clarify what researchers believe may be some of the factors that could cause this devastating disease.
Who gets lupus?
Researchers are studying two major questions: Who gets lupus and why? At least 1.5 million Americans suffer from lupus, or approximately 1 in 185 people. It is extremely difficult to estimate how many people in the United States have the disease, because lupus symptoms vary widely and its onset is often hard to pinpoint. These factors make diagnosing lupus extremely difficult. People are often diagnosed with other “overlap” diseases such as rheumatoid arthritis, fibromyalgia, and other connective tissue disorders before receiving a lupus diagnosis. According to one recent Michigan study, lupus may be twice as common as previous estimates suggested.
Here are some things we do know about lupus:
- Many more women than men have lupus (studies suggest that 90% of those diagnosed are women), although there are still many men living with lupus.
- Lupus is two to three times more likely to occur in women of African America, Asian, Hispanic, and Native American descent than it is in Caucasian women.
- Those of African American and Hispanic descent are also more likely to have serious organ system involvement.
- The question of genetic involvement comes up often because lupus can run in families. That being said, the risk is quite low that a child or sibling of a patient will also develop lupus.
What causes lupus?
This is a question that, unfortunately is not easily answered. 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 of developing lupus. Some of these factors are listed below:
- Genetics- While a family history of lupus does not mean an individual will get lupus, it can determine a person’s predisposition to 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- Because women in their childbearing years are the most common demographic afflicted with lupus, research suggests that higher levels of hormones, such as estrogen and progesterone, are linked to auto-immune diseases like lupus. For lupus in children, it is possible that puberty can be a trigger.
- Illness- 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. The above-listed, 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 and even disappear.
- A Combination of Factors- Many in the medical and research fields believe that a combination of all the above listed factors is likely making some people more susceptible to getting lupus, than a person with perhap, only one of the factors.
How can clinical research trials help?
Researchers are working hard to find out what causes lupus and they have learned much about the disease in recent years. A number of new medications that may be effective in the treatment of this devastating disease have been discovered through research, and they are now being tested in clinical trials. As frustrating as it may be to not understand, with certainty, the cause of lupus, it is vitally important for those suffering with this disease to receive proper care and treatment. And we know that this can be a daunting task. Coping with a chronic disease, and having no understanding of the root cause, can leave you feeling both frustrated and powerless.
One way to gain some control, or feel effective, could be to participate in a clinical trial. A few of the benefits of participation in a trial may be:
- Patients can play a more active role in their own health care
- Gain access to new research treatments before they are widely available
- Help others by contributing to medical research through participating in clinical trials
For information about current lupus clinical trials in your area, visit Alliance for Lupus Research or find other trials here: www.clinicaltrials.gov. Be sure to discuss participation in any clinical trial with your physician to help determine the pros and cons for your specific medical situation.
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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.