Lupus is a chronic, autoimmune disease that can damage any part of the body. It is one of the cruelest, most mysterious diseases—both unpredictable and misunderstood. It is also difficult to diagnose and a challenge to treat. Signs and symptoms tend to last longer than six weeks and often for many years. An estimated 1.5 million Americans have lupus, and about 90 percent of those living with the disease are women. Lupus typically develops when patients are between ages 15 and 44 and lasts a lifetime.
Lupus is the result of a problem with the immune system, which is the part of the body that fights off viruses, bacteria, and germs. Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus—a facial rash that resembles the wings of a butterfly unfolding across both cheeks—occurs in many but not all cases. Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs, or even sunlight. Although there’s no cure for lupus, treatments can help control symptoms.
Actress/singer Selena Gomez recently came forward with her lupus diagnosis, and she’s not alone. Actress Kristen Johnston was diagnosed with lupus of the spinal cord, and singer Toni Braxton, rapper Trick Daddy, singer Seal, singer Lady Gaga, and actor/singer Nick Cannon all have the condition.
A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643. The mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659. Thus, the mean annual total costs (direct costs plus productivity costs for subjects of employment age) was $20,924.
- Lupus is not contagious. You cannot “catch” lupus from someone or “give” lupus to someone.
- Lupus is not like or related to HIV or AIDS. In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
- Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- More than 16,000 new cases of lupus are reported annually across the country.
- Lupus is two to three times more prevalent among women of color—African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians, and other Pacific Islands—than among Caucasian women.
The list of potential symptoms of lupus is lengthy and includes muscle pain, chest pain, osteoporosis, and depression. Rare symptoms include anemia, dizziness, and seizures. Fortunately, not everyone gets every symptom. While new symptoms can appear, old ones often disappear. Living and coping with lupus or any other chronic illness can be difficult, but learning proper techniques and tools for coping can help patients with lupus live a positive and productive life.
As health communicators we should be committed to developing new and innovative resources to ensure that all people touched by lupus have access to the information and support services they need to help more people learn about the disease. Empowering those affected to educate others and communicate with their families, friends, and the health professionals they rely on for their physical and emotional well-being ensures that they are not alone with their condition.