Living with Lupus

Audrey—July 1, 2007

Lupus has disproportionately ravaged the Asian community and other communities of color, affecting Asian American women two or three times more often than white women.

Lupus is a chronic disease where the body attacks its healthy tissues, resulting in redness or swelling, pain and organ damage. It affects each person differently and can be very mild or excruciatingly severe. Panoply of symptoms may come and go without warning:

• A red rash or color change on the face, often across the nose and cheeks
• Sun-sensitive skin; painful or swollen joints, especially after waking up
• Mouth and nose sores
• Sharp chest pains
• Seizures or psychosis
• Blood or kidney problems

Other symptoms include fatigue, fever, hair loss, swollen lymph nodes, dry eyes and mouth and muscle weakness. There is no single test to tell whether you have lupus or not. Usually the disease will be diagnosed by a combination of your medical history, a physical examination and laboratory tests. If you have lupus, you will have some, but not necessarily all, of these symptoms. Always check with your doctor.

The causes and cures are yet unknown, but researchers speculate that genes are involved, as nearly half of lupus patients have a relative with the disease. Lupus is estimate to affect 1 million to 1.5 million Americans, 90 percent of whom are women, mostly teenaged and young.

The data on lupus in the Asian American community is scarce, but anecdotal evidence is enough to make doctors and advocates worried. Extremely low awareness levels among Asians Americans coupled with the community’s fear and stigma of having any chronic illness means the disease is being forced underground.

It was 1999, and Karen Ng was feeling sluggish. But she figured that was to be expected. A biology graduate student on the pre-med track, she attributed her fatigue to the stress from her fervent studying.

At Thanksgiving dinner with her family in Palm Springs, Calif., the warm desert air pushed temperatures into the 60s and 70s, but Ng was freezing. Her joints were so painful and swollen she couldn’t hold a toothbrush.

Ng’s health continued to deteriorate, but she still found excuses for her health problems.  Eventually a doctor tested her blood and sent her straight to the emergency room. She had type 4 lupus kidney disease, the most serious type.

Ng’s kidney disease was so severe she had to enter chemotherapy. Ng moved back in with her parents in California to undergo chemotherapy, and only then was she blindsided with the emotional ramifications.

Ng, founder of Hospital for Special Surgery’s LANtern (Lupus Asian Network) Program, stresses that the emotional impact of lupus is equally as devastating as the physical aspects, which is something Asian communities tend to overlook. This is where LANtern comes in. Ng started the New York-based program in 2001, and today it remains the only group in the country dedicated to Asian Americans with lupus. Its main service is a toll-free nationwide bilingual English and Chinese support line where people can talk to peer health educators who are lupus patients themselves. “[Lupus] is the most mysterious, confusing, complex disease you can possibly dream up. Not knowing what’s going to happen, not knowing how it’s going to affect you--it’s very debilitating,” says Ng.

Exacerbating the issue is that Asian women tend to hold back from complaining about feeling tired.  Lupus can cause overwhelming fatigue. “Lupus patients get a lot of grief because people think they are faking it or being lazy, particularly in Asian communities who value strength and not complaining,” Ng says.

One of the biggest misconceptions about lupus in the Asian American community is that it’s an automatic death sentence. Today people with lupus can and do have healthy, normal lives with the proper treatment and lifestyle.

While much about lupus is unknown, researchers are certain it’s not contagious, and LANtern emphasizes that there is nothing patients can do to prevent or cause lupus.

What is important, Ng says, is to listen to your body and don’t dismiss symptoms. Today, Ng is maintaining her health, and looks as healthy as the next person. She has run half-marathons, skied, snowboarded, snorkeled and remained active when feeling well. She urges Asian American women to be proactive about treatment and care, learn as much as possible and ask questions. “Ask for help because being proud and independent can also make you a fool. I collapsed in the emergency room because I waited until the last minute to seek help,” Ng says.