A closer look at the cruel mysteries of lupus

A nine-year-old Chinese-American girl develops a reddish rash across her cheeks and nose and complains to her mom that she always feels tired. A 41-year-old African-American marathoner thinks he is healthy until, suddenly, he suffers a stroke. A white college student, age 21, starts experiencing mysterious bouts of joint pain in her hands, then develops a blood clot in her leg. A 35-year-old Latina woman begins bleeding from her mouth and is rushed to the ER.

These people appear to have nothing in common. At a glance, it seems like each person’s symptoms must be caused by a different illness. But their varying health problems share a common cause — they are all living with an autoimmune disease called lupus.

WHAT IS LUPUS?

Lupus is a chronic (lifelong) disease caused by an overactive immune system, which leads to widespread inflammation and damage throughout the body. It can cause a range of complications from heart attacks to kidney failure, and there is currently no cure. Since the disease can affect any organ in the body, lupus can look very different from person to person — some people are severely limited by their lupus, while others are able to live fairly normal lives. One person’s lupus can also look very different from day to day. Sometimes, triggers like stress, illness or too much sunlight can cause a lupus flare, making symptoms worse. Other times, symptoms can remain quiet for weeks or months on end.

Anyone can develop lupus — adults, teens and children of either gender. The reasons the disease develops in a particular person are not fully understood, but researchers believe a combination of genetics, hormones and environmental factors are involved. However, not every demographic is affected equally by the disease. Lupus is seen most often in women between the ages of 15 and 44. And in the U.S., lupus is more common, develops earlier and is most severe in African-Americans and Latinos.

FORMS OF LUPUS

Most people with lupus have systemic lupus erythematosus (SLE), in which one or more major organs are involved. Rheumatologists, who are specialists in the musculoskeletal system, typically treat this form of lupus.

A smaller number of people have cutaneous lupus, which affects the skin. It causes sores that can leave scars, pigmentation changes and hair loss.

High doses of certain medications can cause drug-induced lupus. However, symptoms typically go away when the medications are stopped.

Neonatal lupus is a rare condition that can occur in unborn babies of women with systemic lupus.

Lupus is often referred to as a cruel mystery. Its cause is unknown, and its effects can range from mild to life-threatening.

DIAGNOSIS

Confirming that a patient has lupus can be difficult. A series of blood and urine tests, along with a physical examination, help medical professionals reach the diagnosis. The American College of Rheumatology has developed a list of 11 common criteria to help doctors make a diagnosis. Among the 11 criteria doctors look for are kidney disorders, photosensitivity, oral ulcers, discoid rashes (which appear as red, disk-shaped patches) or what is known as a malar rash, which appears over the cheeks and nose, often in the shape of a butterfly.

  • On average, from the time they first notice their lupus symptoms, it takes nearly six years for people with lupus to be diagnosed.
  • People with lupus take, on average, nearly eight prescription medications to manage all their medical conditions.
  • Lupus can strike anyone at any time, but 90 percent of people living with lupus are women.
  • 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
  • Lupus usually develops between ages 15 and 44, and lasts a lifetime.

COMMON SYMPTOMS

Common symptoms of lupus include extreme fatigue, painful or swollen joints, fever, anemia, butterfly-shaped rash across the nose and cheeks, sensitivity to ultraviolet light from the sun or indoor fluorescent lights, abnormal blood clotting, mouth or nose ulcers, pain in chest during deep breathing, hair loss and headaches.

If you or a loved one have some of these symptoms, please go to the Could It Be Lupus questionnaire at resources.lupus.org for more information.

TREATMENTS

When lupus is treated, the goal is to quiet the overactive immune system. Many people require a combination of medications to do this. The Food and Drug Administration has approved only four medications for lupus: aspirin; corticosteroids, such as prednisone; Plaquenil®(an antimalarial); and Benlysta® (a monoclonal antibody biologic). But Benlysta is the only drug created specifically for lupus.

DISEASE MANAGEMENT

While lupus tends to affect individuals differently, there are certain strategies to help manage the disease. By learning more about lupus, people can gain the knowledge they need to make decisions that positively affect their health. It’s especially important to become aware of the triggers that can cause lupus flares.

Most people with lupus experience extreme pain and fatigue, but these symptoms can be difficult to treat. Finding a balance between staying physically active and getting plenty of rest will help — although this can also be one of the most challenging aspects of living with lupus. Many people with lupus also struggle with getting others to understand a disease that is, for the most part, invisible. If you know someone with lupus, ask how you can help and encourage them to visit the National Resource Center on Lupus, an online collection of up-to-date resources and information on lupus.

Jenny Thorn Palter, B.S., has been working at the Lupus Foundation of America for 20 years as Editor-in-Chief of Lupus Now magazine, Publications Director, and Senior Writer for the National Resource Center on Lupus. Diagnosed with systemic lupus in 1993, she finds great personal satisfaction in helping individuals and families learn about and manage the challenges of this complex disease.

Shannon Kelleher, is a senior content writer at the Lupus Foundation of America. She has an M.S. in science journalism from Boston University and enjoys writing about health education and lupus research.