Patient Care

Experts Shine Light on Lupus at Public Education Session

Sep. 13, 2010

Patients affected by lupus, along with their families and friends, are invited to the University of Rochester Medical Center’s free patient education day on Saturday, Oct. 9

Held from 12:30 to 4 p.m., the afternoon event features doctors and nurses from URMC’s lupus clinic discussing how the disease affects the body. The afternoon include tips for managing fatigue that often accompanies the disease, information about the promise of clinical trials underway in Rochester, and updates on research conducted in the University’s NIH-funded Autoimmunity Center of Excellence, which may spawn new approaches for disease-management. A patient discussion panel will offer a glimpse into the real-life experiences of people coping with the disease. To reserve your place, please call Janet DiMora at (585) 273-4670.

In lupus – like in rheumatoid arthritis and multiple sclerosis – the immune system fails to differentiate between its own good cells and dangerous invaders. Rather than solely target viruses and other harmful foreign materials, it erroneously churns out antibodies that destroy its own tissues. As a result, lupus sufferers can experience inflammation, pain and ultimately, damage, to their joints, skin, blood, and even critical organs such as the heart, kidneys and brain.

This year's event will focus on managing lupus-related fatigue.

Unfortunately, a lupus diagnosis (usually made by a series of blood tests) is not always cut and dried. Earlier this summer, pop performer Lady Gaga’s announcement that she was “borderline positive” for lupus brought the slippery nature of the disease to the spotlight.

“Symptoms can be unclear, can come and go, and can evolve over time. Nevertheless, early diagnosis is critical,” said Jennifer Anolik, M.D., Ph.D., a physician in the Division of Allergy/Immunology and Rheumatology and the event’s organizer. “That’s why we’re passionate about boosting disease awareness and education. When patients are connected with the proper specialists, we can treat and relieve some symptoms sooner, and sometimes, in the more severe cases, we can even help prevent irreversible organ damage.”

Lupus affects close to one and a half to two million people nationwide; 90 percent of are women, who are most often stricken in their childbearing years. By and large, most people find it to be a controllable disease – perhaps experiencing fatigue, joint pain, or a rash, for instance, but otherwise managing well between medicine and consistent monitoring by their doctors. A smaller set of patients, however, do suffer a more extreme disease course, sometimes facing life-threatening problems. Limited epidemiological research estimates that, nationwide, close to 16,000 new lupus cases are diagnosed each year.

Anolik and her colleagues, rheumatologists Iñaki Sanz, M.D., and R. John Looney, M.D., not only treat 400 lupus patients throughout Western New York – they also are in hot pursuit of some of the nation’s most promising treatments.

“Interest in lupus research has really exploded, and the coming decade looks promising,” Anolik said. “We’re optimistic that better treatments are on the horizon, and are proud that we can grant our patients exclusive access to potential new therapies in a patient-centered care environment.”

In fact, at this year’s education event, physicians will discuss what a deeper commitment to “patient-centered care” actually looks like in URMC’s Lupus Clinic.

To register for the event, call Janet DiMora at (585) 273-4670. For more information on lupus, or the University’s related specialty clinics, visit, or call Shirley Parks at (585) 341-7900 or Maria Allen at (585) 275-7167.