今年2月28日是第19个国际罕见病日，旨在提升社会对各类罕见疾病的关注与认知。 重症肌无力是一种慢性自身免疫性疾病，主要分为眼肌型和全身型。2018年，全身型重症肌无力被纳入 国家第一批罕见病目录。该病病程长、易复发，严重影响患者的日常生活和工作，急性加重时亦可危及 生命。 面对这一疾病，吉林大学白求恩第一医院神经内科主任医师邓晖强调，规范治疗是基础。急性期症状缓 解后，患者应坚持足疗程的巩固治疗，降低复发风险；对于非急性期患者，应力求尽早实现双达标—— 既要控制好症状，又要最大限度减少药物副作用，从而更快、更好地回归正常生活。 "治疗不仅要追求'双达标'，更要尽早实现'双达标'，这样患者才能更快地回归高质量的生活。"邓晖 说。 临床上，有些患者在急性发作住院、症状好转出院后，感觉身体恢复了，便自行停药。 现实中，一部分处于非急性期的患者，长期依赖胆碱酶抑制剂、糖皮质激素或免疫抑制剂等传统药物， 虽然控制住了部分症状，但仍面临疗效不够理想、副作用影响生活等问题。 "这其实很危险。"邓晖指出，急性发作后出院的一年内，仍是复发高危期。表面上症状缓解了，但免疫 紊乱尚未完全恢复，身体对感染的抵抗力仍比较弱。一次普通 ...

Core Insights - Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that imposes a significant burden on patients, families, and society, necessitating a focus on controlling disease activity while minimizing long-term treatment risks [1][2] Group 1: Disease Characteristics - SLE is characterized by an immune system that mistakenly attacks the body's own tissues and organs, leading to diverse clinical manifestations [2] - Approximately 45% of SLE patients in China experience kidney involvement, and 37% have blood system abnormalities, with these rates being higher than in Western populations [2] - China has the highest number of SLE patients globally, predominantly affecting young women of childbearing age, with an average onset age of around 30 years [2] Group 2: Treatment Landscape - Historically, SLE treatment options were limited, primarily relying on steroids and immunosuppressants, leading to a "drug scarcity" situation for patients [3] - Long-term use of steroids can result in significant side effects, including obesity, osteoporosis, and elevated blood sugar levels, while immunosuppressants may increase infection risks [3] - The treatment strategy for SLE is shifting from "symptom control" to "long-term remission and organ protection," with the concept of "targeted therapy" emerging to maintain low disease activity or clinical remission [3] Group 3: Advances in Treatment - Recent advancements in treatment options, including biological agents, small molecule drugs, and cell therapies, have revolutionized SLE management [3] - Effective management of steroid use is crucial, as maintaining steroid levels without reduction equates to not achieving treatment goals [3] - The evolving treatment landscape aims to balance the reduction of steroid-related side effects with the risk of disease relapse during tapering [3]

Core Viewpoint - The meeting held on November 22 aims to enhance the medical quality control and safety management capabilities of dermatology and venereology in Jinan, aligning with the Shandong Provincial Health Commission's 2025 goals for medical quality improvement [1][3]. Group 1: Quality Control Goals - The first core goal established is to increase the screening rates for immunosuppressants, biological agents, and small molecule targeted drugs before and during treatment for psoriasis, a prevalent chronic inflammatory skin disease [3]. - The second goal focuses on improving the standardized treatment rate for syphilis patients, emphasizing compliance with medication plans, complete treatment courses, and standardized follow-ups [3]. Group 2: Implementation and Management - The director of the quality control center, Wang Dajian, highlighted that the established quality control goals are crucial for enhancing the uniformity of dermatology and venereology diagnosis and treatment across the city [5]. - Wang Dajian called for clear division of responsibilities among member units, detailed implementation plans, and strengthened departmental collaboration to ensure the effective execution of quality control requirements [5]. - The meeting set a clear path for improving the quality of dermatology and venereology in Jinan, with the quality control center leading the implementation of measures and conducting regular evaluations to enhance standardization [5].