系统性硬化症患者与医生视角：共同面对
Living with Systemic Sclerosis: A Patient and Physician Perspective.
作者信息
Young Arissa, Rudy Brittany, Volkmann Elizabeth R
机构信息
University of California, Los Angeles, 200 Medical Plaza Suite 365-C, Los Angeles, CA, 90095, USA.
Patient Author, Los Angeles, CA, USA.
出版信息
Rheumatol Ther. 2023 Aug;10(4):785-792. doi: 10.1007/s40744-023-00555-z. Epub 2023 May 13.
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.
一位系统性硬化症患者描述了与被诊断出患有许多人都不熟悉的疾病——系统性硬化症相关的恐惧。这位患者也是本文的共同作者，她还讲述了作为一名被诊断患有慢性且有时使人衰弱疾病的年轻人所面临的挑战。尽管最初被告知她只有6个月的生命，但她积极拥抱生活，成为了其他系统性硬化症患者的有力倡导者。两位专门研究系统性硬化症并在卓越硬皮病中心工作的风湿病学家提供了医生的观点。这部分详细介绍了早期诊断系统性硬化症目前面临的挑战以及延迟诊断的危险。它还回顾了多学科专业中心在系统性硬化症患者护理中的重要性以及通过教育增强患者能力的重要性。
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