What The Heck Is Lupus? 6 Things We Should All Know About It, But Don’t.

No. 6 could help change your life — or the life of someone you love.

If you've never heard of lupus, you're not the only one, as surveys have shown most Americans have major misconceptions about it. In recent years, that has started to change thanks to celebrities such as Selena Gomez and Nick Cannon, who live with lupus, and have opened up about their experiences with the illness and have donated to the cause. 

Still, not nearly as many people know what lupus actually is, much less how to recognize symptoms and seek a diagnosis from a doctor. Believe it or not, you might think you don't know anyone with lupus, but this disease often hides in plain sight, as many of the symptoms can be hard to identify. Far too many people suffering "don't look sick." 

That's exactly why it's so important for everyone to educate themselves about lupus. These six facts will change the way you think about lupus, and could even help change a loved one's life. 


I. Lupus is a chronic illness.

Lupus is a chronic (ongoing), autoimmune disease, meaning the immune system attacks its own tissues. Lupus can affect any part of the body, causing widespread inflammation and tissue damage in the joints, skin, brain, lungs, kidneys, and blood vessels. It should be noted that while lupus is a serious, lifelong disease, it is neither contagious, nor is it cancer.

Though there is no cure for lupus, these symptoms can range from mild to life-threatening, and can cause long-lasting damage — so should always be treated by a health care professional. With proper medical attention and certain lifestyle changes, many people with lupus can not only control their symptoms, but can lead a productive and fulfilling life.

2. Lupus can affect anyone.

While the causes of lupus are unknown, researchers believe they are linked to a variety of environmental, genetic, and hormonal factors. Both men and women can develop lupus, though women of childbearing ages are at the greatest risk. (Nine in 10 people diagnosed with lupus are women between 15 and 44 years old.) Some minority and ethnic groups, including Blacks/African-Americans, Hispanics/Latinos, Asians, and American Indians/Alaskan Natives are also at an increased risk of developing the disease. 

Of course, not even celebrities are immune to this autoimmune disease. Selena Gomez was diagnosed with lupus at age 21 and subsequently sought treatment. Since then she has donated and supported advancements in lupus research. "I continue to be optimistic about the progress being made in lupus research," Gomez said in a statement. "I am hopeful for the millions of us around the world that may benefit from this."

3. It’s not always easy to identify the symptoms.

The most common symptoms of lupus include fatigue, pain or swelling in joints, skin rashes (especially on the face), and fevers. While these symptoms often resemble those of everyday illnesses, like the common cold or flu, if you start to notice them regularly and/or for prolonged periods of time, you should consider completing the Could it Be Lupus? questionnaire and share it with your doctor to see if you might be at risk. Some other symptoms can include sun sensitivity, oral ulcers, arthritis, lung problems, heart problems, and kidney problems.

4. And that's why lupus is difficult for doctors to diagnose.

It often takes a combination of symptom assessments, physical examination, X-rays, and lab tests for a doctor to diagnose lupus. Because the signs and symptoms of lupus can mimic those of other diseases, diagnosis can be challenging and often delayed, potentially taking years. If you think you may have lupus, you should talk to your doctor, who may recommend you see a specialist in rheumatology for a diagnosis. Rheumatologists often use specific criteria for a full, comprehensive diagnosis, and can help patients manage and treat the disease.

5. Everyone experiences the symptoms of lupus differently.

Because the symptoms of lupus are so varied, everyone experiences the disease differently. But when someone experiences a sustained period of higher disease activity that might call for a change in treatment, that's commonly called a flare. Some people with lupus may experience flares every so often — potentially even years apart — while others experience them more frequently. These flares also look different to different people. 

While some may experience mostly joint pain and swelling, others can have severe kidney involvement that may require a transplant. For some people, symptoms go away and lab findings are normal; this period is called "remission." Remission can occur when a person with lupus is still on medication or when medications are stopped.

Depending on these symptoms' severity, a person may be limited in their physical, mental, and social functioning. Fatigue is an especially impactful symptom affecting someone's ability to live their normal life and, in particular, pursue a career. According to a Lupus Foundation of America survey, fewer than half of people with lupus (46 percent) reported being employed. 

Even Selena Gomez took a break from her career as a pop star and executive television producer to deal with the "anxiety, panic attacks, and depression" she experienced as side effects of lupus. Still, Gomez hasn't shied away from the spotlight when it comes to being open and honest about her journey with the disease. "I want to be proactive and focus on maintaining my health and happiness ... Thank you to all my fans for your support," she told People. "You know how special you are to me, but I need to face this head on to ensure I am doing everything possible to be my best."

6. Certain treatments can help lessen the negative effects of lupus symptoms.

There are several types of medications that are used to treat lupus. Besides the medications used to treat lupus itself, sometimes doctors may prescribe other medications for additional problems related to lupus, such as high blood pressure, high cholesterol, or infection. 

A key to living with lupus, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, is to know about the disease and its impact so people can take an "active role" in their treatment. For example, being able to spot the warning signs of a flare can help people with lupus prevent a flare or make the symptoms less severe. Patients and doctors should work together to develop a treatment plan, then review the plan often to ensure it's working, and make changes as needed if new symptoms arise.

For the women and men living with this disease, the most powerful tool for treatment is knowledge. With it, they can feel empowered to take control of their health and live fulfilling lives.


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