Patients and physicians are invited to a Lupus Education Day to learn more about an oft-misunderstood disease, but one for which several potential new treatments are in development.
Doctors and nurses from the lupus clinic at Strong Memorial Hospital will spend Saturday, Oct. 13, offering an educational program at the University of Rochester Medical Center. The afternoon session, geared to patients and family members, is free of charge, while the morning session for doctors carries a $25 registration fee.
Anyone interested in attending either session should call 273-4670 to register.
The day will include discussions of current treatments, new therapies in development, the effects of the disease on the body, and tips that patients can follow to stay healthy.
Lupus affects roughly 1 million people in the United States. Women are about 10 times as likely as men to get lupus, an autoimmune disease that can affect a person’s joints, skin, blood, kidneys, and even organs like the lungs and brain. Fatigue, arthritic joints, and infections are among the most common symptoms. Many patients live a normal life while taking medicine and working with a doctor to keep tabs on the disease, perhaps feeling some joint pain or having a rash occasionally, while others face more serious illness.
“There is a misperception among patients that people with this disease fare very poorly,” said R. John Looney, M.D., a rheumatologist who leads Rochester’s participation in several nationwide lupus studies. “A few do poorly, but the vast majority do extremely well. It certainly helps if patients are diagnosed as soon as possible. Our hope is to help patients and doctors get the disease under control and keep it under control earlier than is routine today.”
Looney is part of a team of doctors and nurses at the University of Rochester Medical Center that is recognized nationwide as a leading research and patient care resource for lupus. Its physicians are among the pioneers of a whole new way to treat the disease, taking aim at immune cells known as B cells. The team has discovered that the drug rituximab, which is approved to treat lymphoma, appears to be effective at treating lupus, and is coordinating a large national study to confirm the results.
Two of Looney’s colleagues have been honored for their work on lupus. Earlier this year Iñaki Sanz, M.D., professor of Medicine, Microbiology and Immunology, was named chair of the research committee of the Lupus Foundation of America, where he helps determine priorities for research into new ways to treat and prevent the disease. And Jennifer Anolik, M.D., Ph.D., has been honored by the American College of Rheumatology for her outstanding research on the disease.
“We are in the midst of the fastest expansion of knowledge about this disease that has ever occurred,” said Anolik, who took the lead in organizing Saturday’s program. “There is so much happening that it’s more important than ever for physicians to be informed about what’s new. October is Lupus Awareness Month, and our goal is to educate both the public and physicians.”
Anolik, Looney and Sanz are physicians in the Division of Allergy/Immunology and Rheumatology and treat about 400 patients throughout western New York who have symptoms of lupus. The University of Rochester Medical Center is part of the Lupus Clinical Trials Consortium, giving patients in Rochester access to potential new lupus treatments.
In addition to the clinic, research on the basic workings of the disease – the type of research that leads to completely new approaches to help patients – takes place at the University’s Autoimmunity Center of Excellence, funded by the National Institutes of Health and headed by Sanz.
Current lupus treatments are laden with side effects, and it’s been more than three decades since any new treatment has been approved. But research is flourishing, thanks in part to the work on B cells by the Rochester team. The Rochester group is currently taking part in nine studies that are open to patients locally.
The rheumatologists don’t have far to look to see the potential that basic research and new treatments have for patients. The doctors also treat patients with rheumatoid arthritis, a disease where treatments have improved dramatically in the last 15 years, thanks to a solid foundation of basic and clinical research.
“We hope over the next 10 to 15 years we will see the same dramatic improvement in lupus that we have seen in the past 10 to 15 years with rheumatoid arthritis,” said Looney. “Today there are numerous promising therapies for lupus that need to be tested in clinical trials, just like there were with rheumatoid arthritis a decade ago. We are excited by how the field has changed and optimistic about the future for our patients,” said Looney.