The story began similarly for two Bay Area Latinas. They were at work when they started to feel unusual coldness and pain in their joints.
Doctors predicted that they had arthritis or rheumatism. But they were wrong.
Further tests and analysis confirmed the women had one of the least recognized and most difficult diseases to diagnose—lupus.
For unknown reasons, the chronic auto-immune disease causes the immune system to mistakenly attack the body’s own healthy cells and tissue as though they were foreign invaders such as bacteria or viruses.
The first six months after the diagnosis were the hardest for Carolina Gopar, a 35-year-old San Jose resident from Mexico who has coped with the disease for 10 years.
“I thought I was dying because I had so much pain in the joints,” she said. “At nighttime, I would scream, cry and I’d wake up all curled up because I was so cold.”
Another Latina with the disease, Maria Elena Tellez, lost a finger on her left hand because her blood circulation began to deteriorate and she developed thrombosis. Despite her hardships over the past 15 years—she has Systemic Lupus Erythematosus—Tellez has maintained a positive attitude.
“Lupus belongs to me and I belong to lupus—it’s what I tell my support group because it’s the truth, isn’t it?” the 45-year-old San Jose resident from Mexico said. “When one accepts the disease it’s a way of trying to evade it, treat it in a manner as to not pay too much attention to it.”
Gopar and Tellez have a disease that is hard to detect but by no means rare.
About 1.5 million Americans and 5 million people worldwide have lupus, the Lupus Foundation of America reports.
And according to the U.S. Department of Health and Human Services’ Office of Women’s Health, an estimated 90 percent of people diagnosed with lupus are women. Furthermore, the disease disproportionately affects Latinas and other women of color who are three times more likely than Caucasian women to have the disease.
People with lupus, which tends to strike young minority women ages 18 to 44, can experience a wide range of symptoms including painful or swollen joints, skin rashes, fever, fatigue, hair loss and kidney problems.
“It is sad because within the Latino community not many people are aware of the disease,” said Maggie Madueño, community outreach director for the Lupus Foundation of Northern California. “Many begin to have the symptoms and are frightened because they think they have lupus and are going to die but there are medicines that can treat it.”
Still, a cure has not been found and there is much the medical and scientific community does not know, including what causes lupus, said the foundation’s executive director, Rene Astudillo.
“It’s possible that the reason it affects women and communities of color more is genes but that’s not the whole picture; there are also environmental triggers,” he said.
The foundation holds Spanish-language support group meetings the first Saturday of each month at the Kaiser Permanente in Santa Teresa and patient education classes at the Kaiser in Santa Clara a couple of times a year.
“We talk about nutrition, how to avoid stress, everything related to lupus,” said Blanca Schwarz who facilitates the classes. “Nowadays people are more eager to get information, they ask and learn more about the disease.”
Currently, about 20 percent of the foundation’s clients are Latino, Astudillo said.
“We’ve been around for 30 years and in the beginning the Latino community did not necessarily want to access services because there was a stigma about the disease, like other diseases, or lots of cultural barriers to approaching an organization to ask for help,” he said.
According to a national online survey released by the nonprofit organization The Advertising Council, 22 percent of women in the United States in their most productive years, from ages 18 to 40, reported hearing more about lupus compared to a year ago.
However, the disease continues to be prevalent among Latinas and language can often be a barrier to obtaining much needed information and resources, said Dr. Ledia Martinez, the office’s regional women’s health liaison.
For this reason, the office launched a campaign of public radio announcements, “Could I Have Lupus?,” in March 2009 to help women understand the disease and its effects and to identify early warning signs so they can seek medical evaluation quickly.
“With these Spanish- and English-language resources, we can significantly increase awareness and help Latinas achieve early diagnosis, which will give them the greatest chance for improved health and long-term survival,” Martinez said.
The 30- and 60-second radio spots in Spanish feature the stories of real women and are aimed at directing women to visit www.podriayotenerlupus.gov or call 1-800-994-9662 to learn more and access local resources.
Lupus patients must take precautions in their everyday lives, like avoiding exposure to direct sunlight, but Tellez and Gopar are living testaments that they can still lead full lives.
Much depends on “the mentality that you have, the positivism with which you see the reality of the illness,” said Gopar, who was able to give birth to a healthy child who is now four months old.
“I knew people who died of lupus at a very young age but [I] live my life as if I didn’t have the disease,” she said.