冲突地区罕见病管理的系统性障碍：来自苏丹一名患有斯特奇-韦伯综合征难民的见解。
Systemic barriers to rare disease management in conflict zones: insights from a refugee with sturge-weber syndrome in Sudan.
作者信息
Saad Awab H, Babiker Ismat B, Saad Sulieman H
机构信息
University of Medical Sciences and Technology, Khartoum, Sudan.
National University, Khartoum, Sudan.
出版信息
J Health Popul Nutr. 2025 Apr 2;44(1):103. doi: 10.1186/s41043-025-00845-y.
Abstract
Sturge-Weber Syndrome (SWS), is a rare neuro-oculo-cutaneous disorder that presents unique diagnostic and management challenges, particularly in resource-limited settings. This editorial reflects on a recent case of an undiagnosed SWS in an Ethiopian refugee patient in Sudan, highlighting systemic barriers to healthcare access during a time of war and the importance of clinical vigilance. We advocate for local and global initiatives to further enhance diagnostic capabilities, develop integrated care systems in recognition and management of such a rare and complex condition.
摘要
斯特奇-韦伯综合征（SWS）是一种罕见的神经-眼-皮肤疾病，带来了独特的诊断和管理挑战，尤其是在资源有限的环境中。这篇社论反思了近期在苏丹的一名埃塞俄比亚难民患者中未被诊断出的SWS病例，强调了战争时期医疗保健获取方面的系统性障碍以及临床警惕的重要性。我们倡导地方和全球倡议，以进一步提高诊断能力，建立综合护理系统，用于识别和管理这种罕见且复杂的病症。
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