Living with Systemic Sclerosis: A Patient and Physician Perspective

Abstract

Abstract The fears associated with being diagnosed with a disease unfamiliar to many, systemic sclerosis, is described by a patient living with systemic sclerosis. The patient, a coauthor, also describes the challenges of being a young person diagnosed with a chronic and, at times, debilitating disease. Despite initially being told that she had 6 months to live, she has embraced life and has become a fierce advocate for others living with systemic sclerosis. The physician perspective is provided by two rheumatologists who specialize in systemic sclerosis and work at a scleroderma center of excellence. This section details the current challenges in diagnosing systemic sclerosis early and the dangers of a delayed diagnosis. It also reviews the importance of multi-disciplinary specialty centers in the care of patients with systemic sclerosis as well as empowering patients through education.

Keywords

• Advocacy
• Education
• Patient perspective
• Systemic sclerosis
• Scleroderma