Lupus is an autoimmune disease, characterized by the body attacking its own healthy tissues. Black celebrities such as Nick Cannon, Seal and Toni Braxton suffer from the disease, and have been vocal about the chronic fatigue and other serious medical issues that are a part of living with lupus. While lupus affects 1.5 million people in the United States, the disease actually affects Black women disproportionately.
Lupus, also known as lupus erythematosus, can also cause joint pain, and some people with lupus suffer memory loss as well. Black women are three times more likely than any other racial or ethnic group to develop lupus. The disease often affects women of child-bearing age, but lupus onset for Black women occurs earlier, and can result in serious organ problems.
Dr. S. Sam Lim, associate professor in the Division Rheumatology at Emory University School of Medicine, found that in a study involving Black women with lupus, that the subjects of the study were between 15 and 44 years of age. Their symptoms ranged from skin rash to kidney failure.
“These women were in the prime of their careers, family and fertility,” he reported. “This means a severely compromised future, with a disease…affecting every aspect of dialing living for the rest of their lives.”
He also shared that the data is a direct reflection of the “burden of lupus in our community.”
Lupus can be very difficult to diagnose and is still widely misunderstood in the medical world. This means that the disease can be very difficult to effectively treat, and there are minimal awareness efforts currently in place, according to the Lupus Foundation of America.
Roughly one in every 250 Black women who are diagnosed are likely to be misdiagnosed, and scientists still aren’t sure why. Doctors aren’t sure what causes lupus, but researchers believe that lupus may be hereditary, since there are certain genetic markers that prevent the immune system from functioning at its best. Other factors, such as viral infections like mononucleosis, can also trigger lupus attacks. No two lupus cases are identical (much like fibromyalgia), which is another reason why a treatment for the disease is hard to find.
Recently, lupus activists from various parts of the U.S. went to Capitol Hill and successfully lobbied for $32 billion dollars toward lupus research for the National Institutes of Health. The funds will also make lupus more of a priority on the United States’ health care agenda. The money raised will be used for treatment, diagnosis and lupus outreach for doctors and patients as well.
Sandra C. Raymond, the president and CEO of the Lupus Foundation of America, stated that the foundation’s research has “shown that, on average, individuals with lupus suffer symptoms for four or more years and visit three or more doctors before they receive a diagnosis of lupus. “ Raymond shared that she is glad to see public health leaders, physicians, advocacy groups and the government come together to provide proper diagnosis and medical care for lupus sufferers.
Fortunately, lupus patients are living longer and are able to manage the disease more effectively. The National Lupus Patient Registry provides resources for lupus sufferers and their families. About 20 years ago, only 40 percent of people diagnosed with lupus had a lifespan longer than three years following diagnosis. However, with the current lupus therapies that are available, many patients who have lupus are able to live much longer lives, although ongoing research is needed to understand the intricacies of the disease.