Against a black background, a young African-American woman stares inquisitively at a delicate filigree mask shaped like a butterfly. Beneath it large white letters announce, “LUPUS … Remove the Mask.”
“I’m really pleased with how it turned out,” Gloria Spadaro said, proudly admiring the poster she plans to display on buses and bus shelters located throughout the Newark and East Orange metropolitan areas.
The posters are Spadaro’s way of celebrating Black History Month—by saving lives. She takes her job seriously because lupus is a special problem for black women. According to Dr. Chad Helmick of the Center for Disease Control Arthritis Program black, middle-aged women suffer from the highest death rate for lupus. And the problem is getting worse: in the past twenty years, it has increased by 70 percent.
As founder and executive director of the New Jersey Chapter for the Lupus Foundation of America (LFA), Spadaro, 62, has dedicated the last 27 years after her own diagnosis “removing the mask” of lupus. LFA market research data estimates 1.4 to 2 million Americans suffer from lupus, or one out of every 185: “more people,” it calculates, “than AIDS, cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined.” Even though the majority of patients are women of childbearing age, especially among African Americans and Latinos, the disease can affect any gender, race or age.
Basically lupus is the body’s immune system gone haywire: this disease-fighting system has lost the ability to tell the difference between foreign invaders, such as viruses and hazardous bacteria, and the body’s own cells and tissues. The antibodies meant to protect the body now attack it. Sun exposure is known to trigger disease activity, with symptoms including joint pain or swelling, fever, fatigue, skin rash, anemia, chest pains and a rash on any part of the body, most likely over the nose and cheek area in the shape of a butterfly—hence “the mask” in the poster.
“If you ever have the flu, then you know how we feel a lot of the time,” Spadaro said.
The posters are part of the Lupus Awareness Project. The goal is to bring people into health centers affiliated with the New Jersey Primary Care Association (NJPCA) and test them for lupus, especially those people without health insurance or who have complicated HMOs. Diagnosing lupus may require a variety of tests and multiple visits to several specialists.
“What we hope to do is to get a lot of people who have symptoms of this disease but who don’t have health insurance and figure they can’t go to a doctor. So they don’t do anything about it until it’s too late,” Spadaro said. “Our outreach is to let the people know that they could go to these health-care centers even if they don’t have the insurance.”
The project is made possible by a $50,000 grant through a collaborative effort of the Bureau of Primary Health Care Office of Minority and Women’s Health and the Department of Health and Human Services, Office of Women’s Health. NJPCA will receive approximately $6,000 for outreach; the New Jersey chapter and the South Jersey chapter of the Lupus Foundation will divide the rest equally.
The East Orange Primary Care Center, located at 444 Williams Street in East Orange, N.J., will serve as the project’s flagship. Eventually, Spadaro said, the project will expand throughout the state. The health center will order testing and make the diagnosis, after which the center will refer the patient to a rheumatologist, a doctor specializing in treating diseases of the connective tissue—the category lupus falls under.
“And from there, instead of having these people go out on their own and fend for themselves,” Spadaro said, “we are going to place them into a seven-week intensive lupus management course so that they could learn to live with it.” Spadaro explained this course has proven to offer better survival rates. Patients are educated in prescription drug taking and possible side effects, relaxation and pain management techniques, as well as special motion exercises.
“It’s free,” Spadaro said. “If someone doesn’t have the money, we will give bus passes so they can attend the workshops.” The chapter is also developing incentives for patients completing the course.
Reaching out to those potentially suffering from lupus is paramount to Spadaro, who is a registered nurse and has a degree in health education and school nursing. After a 20-year search to find out why she tired easily, broke out in rashes and lost her hair, doctors finally diagnosed Spadaro with lupus at age 35 in 1975. By that time, Spadaro said, she had lost 30 percent of function in one kidney. She was first placed on aspirin; then on steroids, which caused severe weight gain, further hair loss and mood swings; then finally on chemotherapy for seven years to deter further kidney damage. Today, Spadaro takes only aspirin for the joint inflammation and Procardia, a vasodilator to prevent the constriction of small blood vessels in her hands and feet. Spadaro warned she knew one woman who, when diagnosed, had to have her leg amputated.
“That’s why it’s so important to learn,” Spadaro said, slowly dragging each word out. “You don’t want to know what can happen with lupus because it’s scary. But if you don’t know, then you can’t take care of a symptom that comes forward.”
Despite the enduring problem of lupus for black women, the overall situation has improved. Thanks to better testing and enhanced health-care professional education, Spadaro said, lupus is being diagnosed earlier. The disease is also understood better medically. “The survival rate has completely reversed from 1960 to 2000,” Spadaro said. In 1960, the survival rate was 10 percent after five years. Now it’s 90 percent. And ten-year survival rates are projected at 80 to 90 percent.
“They’re making progress every time they do research. Do you want to know why?” Spadaro asked, defiantly digging her feet into the carpet and pointing to herself: “Grassroots—us. We raised funds for research. We made the public more aware.” She explained that when she cofounded the New Jersey chapter with four other lupus patients shortly after her diagnosis, there were only 14 lupus groups in the country. There are now more than 100.
The grant is the largest donation the New Jersey chapter has ever received. Spadaro said the chapter’s been surviving on “a grand here, a grand there.” The bulk comes from individuals and fundraising, which the chapter does itself. Since Sept. 11, 2001, and the economic slowdown, the competition among charitable organizations for individual and corporate contributions has heightened. The chapter had to discontinue a youth workshop because, Spadaro said, she didn’t have the funds.
After volunteering for the past 22 years and as the sole remaining founder, Spadaro accepted the executive director position in 1996 at $45,000 per year for a 37-hour workweek. She spends nearly 60 hours a week speaking publicly, programming health care, fundraising, counseling and educating patients, writing a newsletter and doing all the health fairs.
The hours take a toll on Spadaro. There are days, she said, when she can’t get out of bed. Yet she is driven “to have enough money to do the outreach, to help the people, to give them the programs they need to tell them they could survive this.”
“It is a survivable condition,” Spadaro said, passionately. “And I’m perhaps the best living example of that.”
Donna Zukowki is a journalism and media studies major at Rutgers-Newark.
