Newswise — New York City's Hospital for Special Surgery (HSS), a world leader in the research and treatment of rheumatologic diseases, has found that providing educational and emotional support workshops to lupus patients has significantly advanced its lupus research initiatives. On the milestone of the Systemic Lupus Erythematosus (SLE) Workshop's 20th anniversary, HSS has announced that the workshop has become one of the longest running lupus peer support and education groups in the country, reaching over 4,000 people and enabling the hospital to build its lupus registries, which in turn benefit lupus research.
For patients suffering from lupus, a rheumatologic disease that affects approximately 1.5 million Americans, according to the Lupus Foundation of America, finding peer support specific to lupus can add to the stress of the disease. A highly complex autoimmune disease, lupus can be life-altering and challenging to both patients and their health care providers. The free, monthly SLE Workshops include informal group discussions and provide an opportunity for participants to share their experiences and gain peer support. Leading U.S. rheumatologists and clinical researchers, as well as non-medical specialists with an interest in improving the lives of those affected by lupus, participate in the workshops. As one patient said, "This workshop feels like a safe haven for me. It feels good to share my experiences with people who understand exactly what I am going through."
Dr. Stephen Paget, HSS physician-in-chief and chairman of the rheumatology department, said: "Like any disease, lupus affects patients emotionally as well as physically. But unlike diseases such as cancer or HIV/AIDS, support for lupus patients and their families is not readily available. We created the SLE Workshop to provide a forum for lupus patients to ensure they had access to the latest treatment information and the emotional support they needed."
"But we also learn from the patients who participate in our workshops," added Dr. Paget. "Listening to the patients enables our investigators to address the most important issues facing lupus sufferers." The workshops have also helped HSS build its lupus registry " one of the largest lupus registries in the United States " with essential clinical and DNA information on over 600 patients with lupus. HSS also has the only pediatric lupus registry in the country.
HSS is at the forefront of clinical research in SLE and has the largest group of rheumatologists in the United States. In 1993, HSS became the nation's first NIH-sponsored Specialized Center of Research in SLE, and in 2001 inaugurated The Mary Kirkland Center for Lupus Research, where specialists develop and advance novel research " and implement patient programs that facilitate improvement. HSS offers additional lupus support programs, LupusLine, Charla de Lupus, and LANtern.
To attend the SLE Workshop or for additional information, please contact Jillian A. Rose, the workshop coordinator in the department of Patient Care and Quality Management at (212) 774-7654. Founded in 1863, Hospital for Special Surgery is a world leader in orthopedics, rheumatology and rehabilitation. Top ranked in the Northeast in its specialties by U.S. News & World Report, HSS was awarded Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Medical College of Cornell University, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at NewYork Weill Cornell Medical Center. All HSS medical staff are on the faculty of Weill Medical College of Cornell University. Its Research Division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City, http://www.hss.edu.
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