Lupus Updates, Resources: Free Education Day Oct. 19

It’s a particularly exciting time in lupus because we now have the scientific tools to translate basic discoveries into clinical trials and good collaborations between academics and the pharmaceutical industry to actually make it happen.

The University of Rochester Medical Center (URMC) invites patients affected by lupus, along with their families and friends, to the seventh annual free patient education day on Saturday, Oct. 19. From noon to 3:30 p.m. in Helen Wood Hall (255 Crittenden Blvd., Rochester, N.Y.), URMC doctors will discuss how the disease affects the body. The event will also incorporate patient and family perspectives, which are invaluable to widening the understanding of lupus.

This year’s agenda homes in on lupus clinical trials, cutting-edge research funded at URMC to understand how B cells activate other immune cells in the disease, and what distinguishes fibromyalgia from lupus. A patient and family panel will provide an intimate view of the disease from those living with it. The day wraps up with a chance for questions to be addressed by experts.

The event is free of charge; however, reservations are required. Please call Joy Gangross at (585) 275-2891 to secure your seat.

A closer look at lupus

As with rheumatoid arthritis and multiple sclerosis, with lupus, the immune system doesn’t differentiate between its own good cells and dangerous invaders, like viruses and bacteria. Rather than solely attacking these foreign materials, it generates faulty antibodies that also destroy the body’s own tissues. Fortunately, with early diagnosis and proper specialist care, patients can be treated treat earlier, enjoy symptom relief, and sometimes, in the more severe cases, even avoid irreversible organ damage.

“Active research continues to provide new insights into the immune mechanisms that lead to lupus, and we’re hopeful these insights will pave the way for improved diagnosis and more targeted treatment,” said Jennifer Anolik, M.D., Ph.D., associate professor of Medicine in the Division of Allergy/Immunology and Rheumatology, director of the URMC Lupus Clinic, and the event’s organizer. “Lupus has a wide array of symptoms, ranging from mild fatigue, joint pain, and skin rashes to more serious organ involvement, like inflammation in the lungs, heart, and kidneys. Understandably, diagnosis can be a challenge—but early diagnosis is critical. There’s increasing evidence that medications like hydroxychloroquine may slow down the disease process. That’s why URMC is so committed to educational programs that raise awareness about the disease.”

“It’s also important for patients to know about the many clinical trials investigating new, targeted therapies for lupus,” Anolik said.

“Patient participation in these trials is essential for us to understand how new therapies work, and hopefully, to help us bring effective drugs to FDA approval.”

A pointed example of the path from basic research to new therapies is the FDA approval of Belimumab in 2011; the drug represents a new wave of “targeted” therapies—an improvement over our current medications, like steroids, which broadly suppress the immune system and can have unwanted side effects like infections.

“The approval of Belimumab has created a lot of momentum in the field and heightened interest in clinical trials in lupus,” Anolik said. “It’s a particularly exciting time in lupus because we now have the scientific tools to translate basic discoveries into clinical trials and good collaborations between academics and the pharmaceutical industry to actually make it happen.”

Anolik, who will discuss the state of research and clinical trials, says URMC’s Allergy/Immunology and Rheumatology division continues its keen focus on investigating targeted therapies. She and other University of Rochester scientists were among the first to study B-cell targeted therapies (like Belimumab).

Lupus affects close to 1.5 to 2 million people nationwide; 90 percent of these are women, who are most often stricken in their childbearing years. By and large, most people find it to be a controllable disease, manageable with 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.

To learn more about URMC’s Lupus Clinic and program, visit http://www.urmc.rochester.edu/medicine/allergy/patients-families/lupus-clinic.cfm. You can also call Maria Allen at (585) 275-7167, or the Clinic’s general line, at (585) 484-0901.

To reserve your place at the free education day event, please call Joy Gangross at (585) 275-2891.