NEW ORLEANS — The Scleroderma Foundation and Tulane Lung Center are preparing for 650 people from around the world to attend its 2016 National Patient Education Conference later this month in New Orleans.
This unique educational event will be held at the Sheraton New Orleans Friday, July 29, through Sunday, July 31. The conference focuses on scleroderma, a mysterious, and sometimes fatal, autoimmune disease that causes a person’s body to attack itself by creating too much collagen. This is the largest gathering of its kind in the world for individuals to learn more about the disease.
“For many of the attendees, this conference will be the first time they meet someone else living with the disease,” said Dr. Lesley Ann Saketkoo, a scleroderma expert at Tulane’s Lung Center. “It can be a transformative and life-changing event. A patient who attended last year’s conference said ‘it is nice to know you are not alone.’ Attending the conference is a great reminder that it will get better.”
Scleroderma is a chronic, often progressive, autoimmune disease, which means that the immune system attacks one’s own body. Scleroderma means “hard skin.” It can cause a thickening and tightening of the skin. In some cases, it causes serious damage to internal organs including the lungs, heart, kidneys, esophagus and gastrointestinal tract. As scarring, or sclerosis, of these organs and organ systems progress, they work less effectively, and can lead to organ failure and death. Some medications and treatments can help with certain symptoms, but there is no cure for scleroderma. The disease affects an estimated 300,000 people in the United States.
This year’s conference features the largest program the Scleroderma Foundation has assembled to-date, with more than 70 patient-focused workshops, seminars and panel discussions about every aspect of this complex disease. World-renowned scleroderma researchers and medical professionals will be leading sessions. A unique mini-conference just for kids, teens and their family members will be held to address specific issues that can affect this subset of younger patients and their siblings. Sixty-five patients, who are first-time attendees or who otherwise would not be able to attend due to financial constraints, received scholarships to attend this year’s conference, thanks to the generous contributions of donors to the Scleroderma Foundation.
The conference includes a half-day Continuing Medical Education/ Continuing Nurse Education (CME/CNE) course offered for healthcare professionals about lung involvement in scleroderma.
Destination patient conferences are a growing area of tourism in New Orleans. To meet these unique patient needs, Tulane provides disease-specific education to the New Orleans service industry to support destination patient conferences. Tulane Lung Center conducted scleroderma-specific disability awareness and sensitivity training to the Sheraton hotel and restaurant staff on July 13. With the help of Tulane Scleroderma Support Group members, this training will highlight helpful assistance in light of the many special needs for people living with scleroderma.
