Honi Kurzeja has lived with lupus for 37 years, since she was 25 years old. Although she was told she would live less than five years following her diagnosis, Kurzeja says “it's not considered a fatal illness anymore.”

That, however, is one of the few improvements that have been made to the diagnosis, treatment and awareness of the disease in the last 50 years, in Kurzeja's opinion.

“There have been no new drugs approved by the FDA for lupus in 50 years,” says Kurzeja, the executive director of the Lupus Alliance of Upstate New York. “So many people don't hear about lupus, and how hard it is to live with.”

Kurzeja's own lupus has caused her many problems throughout the time she has had it. She has had multiple toe amputations as the result of vascular problems, and has had a total of four hip replacements. When she was diagnosed in the fall of 2009 with breast cancer, she explained that “part of me said, 'wasn't the lupus enough?'”

Lupus is a chronic disease with no known cure. Lupus is a disease of the immune system, which causes inflammation throughout the body. Lupus can range from mild to severe, and can impact the sufferer's daily life. By a ratio of 10 to 1, young women are more likely to be diagnosed with lupus than men. The cause of lupus is unknown and it is difficult to diagnose.

According to Kurzeja, lupus gets very little media attention because it does not have celebrity backing and no one has identified his or herself as having it in the celebrity world. The lack of media attention, says Kurzeja, makes many of the newly-diagnosed feel abandoned and alone.

Kurzeja notes that many individuals who have Lupus hide their condition for fear of losing out on something because they have a chronic illness, noting that it is hard to know how often or how severe the lupus is going to be and what sort of impact it is going to have on one's life.

Kurzeja's passion for lupus education helped sustain her through her breast cancer treatment and is what is helping her to get through the rough emotional period that follows the end of cancer treatment. Her lupus was a constant consideration during her treatment, and it is what prompted her decision to have a mastectomy instead of receiving radiation. Even today, she is unsure of which symptoms she is experiencing might be cancer complications and which might be from her lupus. “That's an issue I haven't worked through,” she notes.

The Lupus Alliance does its part by organizing support groups for both the newly-diagnosed and their friends and family, and the long-time sufferers. They provide support via phone, doctor referral and an annual seminar. Additionally, they educate the public about the disease through health fairs, educational materials placed in doctors' offices, the organization of a Lupus Walk each year, speeches at various organizations and other outreach programs. The Alliance also provides support for those navigating the long process of lupus diagnosis.

“It's quite different from years ago,” she says. “We try and help people communicate better with their physicians... it can be pretty overwhelming.”

While in the past those who had lupus simply said that they had arthritis due to the obscure nature of the disease, Kurzeja feels that today “most people know somebody who has lupus.”

While Kurzeja says “I'm still very concerned about my breast cancer,” she notes that lupus “is still my passion. Obviously, it [the cancer] set me back for several months,” she says. “[But] you do need something to keep you going.”

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