In March of this year, model and actress Mercedes Yvette, runnerup in the second season of the reality TV show “America’s Next Top Model,” spoke at a news conference about something that’s extremely important to her. The topic wasn’t fashion. Yvette’s concern is lupus, a debilitating disease that she said is often “overshadowed and overlooked.”
The disorder, formally known as systemic lupus erythematosus (SLE), affects an estimated 1.5 million Americans. Unfortunately, lupus disproportionately affects young women of color, including Yvette.
As a national spokesperson for the Lupus Foundation of America (LFA), Yvette was at the news conference, along with Frances Ashe-Goins, RN, MPH, deputy director of the U.S. Department of Health and Human Services (HHS) Office on Women’s Health (OWH), to help kick off the first-ever Ad Council media campaign on lupus awareness, co-sponsored by LFA and OWH. The theme of the campaign—which includes print, TV, radio and online ads depicting minority women of various races and ethnicities—is “Could I Have Lupus?” There is also a bilingual (English/ Spanish) campaign Web site, www.couldihavelupus.gov, which offers lupus information and resources, an online discussion forum and personal stories from women who are living with the disease.
In addition to increasing the general public’s awareness, Ashe-Goins says she hopes to encourage minority nurses to learn more about lupus and how they can help close the gap of unequal lupus outcomes. “Minority women who are diagnosed with lupus tend to [have a more severe form of the disease than Caucasian women],” she notes.
“It’s important [for us as nurses of color] to get the message out to minority communities about what lupus is,” agrees Amy Ma, DNP, APRN, FNP-BC, assistant professor and clinical coordinator in the nurse practitioner program at Long Island University School of Nursing in New York. “We are the front line. We [interact with the patients] more than other health care professionals, so it’s up to us to reach out to our communities with information.”
Lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, forming antibodies that attack normal tissue and organs. It can affect virtually every organ system in the body, causing inflammation and tissue damage. Its complications can result in severe health consequences, including heart attacks, stroke, seizures and organ failure. According to OWH, nine out of ten people who have the disease are female, and it is three times more common in African American women than in white women. Lupus is also more common in women of Hispanic, Asian and Native American descent.
The landmark LUMINA (Lupus in Minorities: Nature versus Nurture) study, conducted for the National Institutes of Health by researchers from the University of Alabama at Birmingham, the University of Texas- Houston Health Sciences Center and the University of Texas Medical Branch at Galveston, revealed that African American and Hispanic lupus patients tend to develop the disorder earlier in life than their Caucasian counterparts, often during their prime childbearing years. They also tend to have more aggressive disease activity, more serious complications and are more likely to die from the disease. Hispanic women with lupus have a poorer prognosis overall and are more likely to experience heart disease and kidney damage, while African American patients are more likely to have complications such as seizures, hemorrhages and stroke.
Although there is no cure for lupus, the disease is manageable, especially when it is detected and treated early. But all too often, Ashe-Goins warns, minority patients are not diagnosed until their disease is in the later stages, when it may have already damaged a major organ in their body. “Sometimes it impacts their kidneys, or their heart,” she says. “Or it may impact their neurological system and they have memory loss.”
There are a number of possible reasons why minority women with lupus don’t get diagnosed sooner. One explanation is that early detection of lupus is difficult in general. Different patients exhibit different symptoms and may suffer from them for several years before finally being diagnosed. Some of the more common symptoms include painful joints, extreme fatigue, hair loss, photosensitivity and a so-called “butterfly rash”—a red skin rash that often appears on the nose or cheeks (and sometimes the upper arms, shoulders, chest, hands or face). These indicators can come and go over time, and they can range from mild to severe. Patients usually have to go through several months of testing before learning they have lupus.
Once diagnosed, patients can be treated by family physicians, rheumatologists or clinical immunologists. A range of treatment options is available, including nonsteroidal anti-inflammatory drugs (NSAIDs) to decrease joint and chest pain, corticosteroids to reduce inflammation, and immunosuppressives to restrain an overactive immune system.
According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), lupus patients can also be treated with antimalarials, such as hydroxychloroquine sulfate (brand name Plaquenil) and chloroquine (Aralen). Although these drugs, as the name implies, were originally used to treat malaria, they have been found to be helpful in controlling symptoms such as fatigue, joint pain, skin rashes and inflammation of the lungs in lupus patients. Antimalarials can also help decrease “flares,” which are instances when lupus comes out of remission, either with new symptoms or recurring old ones.
Socioeconomic factors can also create barriers to treatment for women of color. Lupus medications are expensive. People who lack health insurance— a group that includes minorities at disproportionately high rates—may find it difficult to afford the drugs, so they may forego treatment.
Even if patients can pay for the medicines, they still have to see their health care provider for multiple treatments, even if they are in remission. If the disease has caused organ damage, patients must undergo additional procedures, such as kidney dialysis. As a result, the overall cost of lupus treatment is exceedingly high.
Even though lupus affects minority women at higher rates, health professionals say that at-risk women in communities of color still don’t know enough about the disease.
“In our focus groups [at OWH], we found that women knew about breast cancer, heart disease and HIV/AIDS, but they gave us blank stares when we asked them about lupus,” says Ashe- Goins. She adds that many of the participants knew someone who had lupus but they were clueless about the disease itself.
To fill this knowledge gap, Ashe- Goins developed a lupus awareness program that was initially offered to HHS employees. “We discussed what lupus is, how it’s treated and what lupus patients can do to have a better life. It was highly successful,” she says. “Next, we decided to do a national campaign to warn [at-risk women] about the prevalence of lupus. We wanted to help our young minority women of childbearing age learn to detect the early warning signs.” The result is the national “Could I Have Lupus?” campaign.
During the HHS campaign, Ashe- Goins and her staff found that their target audience, young women, thought the common lupus symptoms of fatigue or a rash were too minor to be taken seriously. The OWH team realized they had to talk about lupus in a way that would grab the young ladies’ attention.
“We told them they could lose their hair,” says Ashe-Goins.
One of the most frequently asked questions she encountered, Ashe- Goins adds, was whether someone can “catch” lupus. “The answer is ‘no,’ it is not an infectious disease,” she says. “However, there is some evidence that in general, autoimmune disorders can be hereditary.” For lupus in particular, says the LFA, a combination of genetics (heredity), environment and hormones is involved.
While national media campaigns and informative Web sites can play a big part in increasing lupus awareness, nurses can make an even bigger impact. As a nurse, you have the ability to reach undiagnosed lupus patients that the “Could I Have Lupus?” campaign may not. When patients enter the health care system, the first person they spend time with is usually a nurse. And that means you can play a pivotal role in helping patients receive an earlier, accurate lupus diagnosis.
• LupusLine©, (212) 606-1952/(866) 375-1427, a national peer-counseling phone support program.
• Charla de Lupus (Lupus Chat)©, (212) 606-1958/(866) 812-4494, a sister program to LupusLine, providing services in both English and Spanish.
• LANtern® (Lupus Asian Network), www.hss.edu/lantern, a patient support program providing services in Cantonese and Mandarin.
“If nurses pay attention to [possible warning signs] in patients as they’re coming in, sometimes they can help the doctor order the correct test,” says Ashe-Goins. For example, if a patient’s creatinine level is very high, it’s a good indicator that she has kidney problems. At that point, the nurse can research a little further to see if the trouble is related to lupus. Similarly, if you discover that autoimmune problems run in the patient’s family, you should consider that lupus could be a possibility.
“Not all kidney problems are lupus, but I’m asking nurses to add that to their consideration,” Ashe-Goins says. “Nurses have time to assess family history, current symptoms and past history. They can help point the patient in the right direction.”
In Amy Ma’s clinical practice as a family nurse practitioner, one of her patients is a Hispanic woman in her early 20s who was recently diagnosed with lupus. “The patient had been complaining of joint pain and a rash. We did some basic blood work, but it was inconclusive. Then we sent her to a rheumatologist,” says Ma, who notes that the entire testing process took months before the patient was diagnosed.
“Part of the reason why the diagnosis took so long is because the patient didn’t think her symptoms indicated something that could be so severe [as lupus],” she adds. As a nurse, Ma felt compelled to encourage her patient to follow through with the testing.
Once the lupus diagnosis was finally confirmed, the next step was to educate the patient about living with her disease and about the possible outcome. “We didn’t want to scare her, but we wanted to prepare her for something that could be a lifelong problem,” says Ma. “Fortunately, there is a lot of hope for her. She didn’t get a very bad flare and there’s not a lot of severe organ damage.”
Even though this patient’s disease was caught early, it is still important for the young woman to keep coming back for follow-up visits. However, says Ma, “the patient is a busy mother of young children and I’m afraid that she won’t take the time to take care of herself and attend follow-up treatments. It’s kind of hard for her to grasp the whole concept that [her lupus] might go away and come back again, but that’s what we as nurses have to explain.”
“Because there is no cure for lupus, patients must maintain visits with their physician, even if the disease is in remission,” says Eulalee A. Greene, RN, a clinical nurse in rheumatology at the Hospital for Special Surgery in New York City, which offers culturally and linguistically competent lupus outreach programs for the minority communities it serves (see sidebar). Greene acknowledges that many lupus patients may not want to come back for follow-up care because they have a sense of dread after they’re diagnosed. “It’s understandable that patients have fear about the disease. They may fear loss of friends, social life or even [loss of] employment.”
In these instances, it’s important for nurses to assist patients in finding support systems to help them cope. “Patients can find help through support groups in their community and through church organizations. Most of all, they should be counseled to reach out to their family or significant other,” Greene says.
Because lupus disproportionately affects women of color, minority nurses who are female also need to be aware of their own risk for the disease. Loretta Jackson, LPN, an African American nurse in Mobile, Alabama who was recently diagnosed with lupus, says it took months of testing for doctors to figure out why she had extreme fatigue and her kidneys weren’t working optimally.
“My doctors had asked me before if I had lupus and I always told them no,” she recalls. It wasn’t until her physician insisted that she have a biopsy on her kidneys that she received her diagnosis. “I didn’t think I had lupus at first, because I’ve always heard about the butterfly rash [as a telltale symptom] and I didn’t have any rash. But I still had lupus.”
Even though Jackson has been a nurse for 17 years, her family wasn’t prepared for the findings. “When the doctor came into the room, my family asked him, ‘What is lupus?’ And he explained. Then, when he left the room, they turned to me and asked, ‘What is lupus?’ again,” she says.
Since then, Jackson and her family have joined a local support group, the Lupus Support Network, which has provided her with ample information about living with the disease. She says the group has helped her find resources for obtaining more affordable medicine and has educated her relatives about how to care for someone with lupus.
Today, her family members are not only knowledgeable about lupus, they’re her biggest advocates. “Before, my 14-year-old daughter didn’t understand why she couldn’t even hug me because it hurt me so bad,” says Jackson. “Now, she’ll say things like, ‘Mama, have you had your medicine for pain today?’ She’ll remind me to take it easy if I’m pushing myself too hard.”
Although Jackson is currently on disability leave from her job as a nurse, she says she’s managing her disease and still has a good quality of life. “I have lupus,” she declares, “but it doesn’t have me.”