May is Lupus Awareness Month, a time to educate, inform and raise awareness of this chronic disease. Considered by many people to be somewhat mysterious – cases can look very different from each other and can be difficult to diagnose – lupus presents unique challenges. Here are five facts to keep in mind as we raise awareness during Lupus Awareness Month and beyond.
1. Lupus is not contagious.
Lupus is an autoimmune disease and cannot be spread from one person to another. A patient with lupus has an immune system that is unable to distinguish the body’s cells from foreign cells like viruses. As one patient recently described it, lupus is what happens when your body is allergic to itself.
2. Lupus is nine times more likely to occur in women than in men.
Of the 1.5 million Americans who suffer from lupus, 90 percent are women. Lupus affects people of all ages and backgrounds, yet young women between the ages of 15 and 45 are most likely to be diagnosed. Women of color are disproportionately affected by the disease; nearly 1 in 250 women of color suffer from lupus.
3. Lupus is incredibly difficult to diagnose.
Common lupus symptoms include fatigue, dry mouth and eyes, rashes and swollen joints. These nonspecific symptoms make lupus difficult to diagnose. In fact, the disease has received the nickname “The Great Imitator.” The average time it takes medical professionals to diagnose the disease is nearly six years.
4. Lupus can be “invisible.”
People with lupus may exhibit several physical symptoms, including rashes, lesions or hair loss. However, many other patients show no sign of physical symptoms at all. These patients often feel isolated and alone, yet they still suffer and struggle with kidney, heart and lung issues, as well as severe chronic pain.
5. While there is no cure for lupus, there is hope.
There is no cure for lupus, but it can go into remission, an extended period of time when patients may experience few or no symptoms. In addition, the Lupus Foundation of America offers resources to help.
Dawn Isherwood, a nurse quoted in an article describing the foundation’s National Health Educator Network, said many patients have questions about their medical coverage, especially because many have lost jobs.
“I tell them to always have hope,” Isherwood said. “We know it’s hard for people, especially when they don’t know the health insurance system. It can be daunting when they already don’t feel well.”
The chronic disease community is wide and diverse, and as part of the effort to help raise disease awareness, the Chronic Disease Coalition continues to feature patient stories, post educational articles and highlight opportunities to get involved in patient advocacy. To get involved, please click here.