Hundreds of physicians, vendors, and those suffering from scleroderma gathered at the Cooley Center last Saturday as the Department of Internal Medicine’s Division of Rheumatology and Clinical Immunogenetics hosted the inaugural bi-annual Scleroderma Patient Education Day along with the Scleroderma Foundation Texas Bluebonnet Chapter.
The event featured a morning breakfast and speakers throughout the afternoon and marked the largest patient education conference ever organized by the Scleroderma Foundation Texas Chapter. Scleroderma, also known as systemic sclerosis, is an autoimmune, multisystem disease that can cause patches of tight, hard skin and can also damage blood vessels and internal organs. Dr. Shervin Assassi, associate professor of Rheumatology and Clinical Immunogenetics and co-director of the Scleroderma Clinical and Research Program, spoke about the disease and said events like these are especially important for patients
“Generally, the affected persons have difficulties accessing up-to-date information about evaluation and management because the disease is relatively rare, and most physicians have limited experience with treating it,” Assassi said.
Assassi said McGovern Medical School currently houses one of the largest specialized scleroderma clinics in the nation, and officials opted to partner with the Scleroderma Foundation to distribute up-to-date information about managing the condition to patients and families through the Patient Education Day. Speakers included Scleroderma Clinical and Research Program co-director Dr. Maureen Mayes, professor of Rheumatology and Clincial Immunogenetics, who talked about new developments in evaluation and treatment, and Dr. Namita Sood, a pulmonary and critical care specialist with Memorial Hermann -Texas Medical Center, who addressed lung involvement in scleroderma.
Other speakers included Dr. Mark Khorsandi of Hand Surgery Specialists of Texas, who talked about management of digital tip ulcers. Dr. Tracy Frech, the director of the Scleroderma Program at the University of Utah, spoke about management of gastrointestinal complications of the disease, and Dr. Ginny Maril, from California Lutheran University talked about development of coping skills for managing chronic diseases such as scleroderma.
“These type of events are important because they bring together local and national experts in scleroderma in order to give patients practical and effective tools for management of scleroderma,” Assassi said. “Also the venue serves a platform for the patients to network among each other and to exchange their experiences in dealing with this potentially devastating disease.”