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透过他们的眼睛:在患有莫比乌斯综合征的患者中,以有限的眼闭合来导航生活

Chilando M Mulenga¹, Khoa D Tran¹, Miguel D Jorge¹

¹Division of Plastic Surgery, Indiana University School of Medicine, USA.

Journal of plastic, reconstructive & aesthetic surgery : JPRAS

|September 18, 2024

概括

患有莫比乌斯综合征 (Moebius syndrome, MoS) 的个体由于眼不完全关闭 (拉戈法塔尔摩斯) 而经历了重大的社会挑战. 定制的沟通工具对于支持那些有这种面部差异的人来说至关重要.

科学领域:

神经学神经学
眼科医生眼科眼科
遗传学是一个遗传学.

背景情况:

莫比乌斯综合征 (MoS) 是一种罕见的先天性疾病,影响头骨神经VI和VII,导致面部和眼不完全关闭 (眼).
在MoS患者中,Lagophthalmos会导致缩,死和膜收缩,影响眼睛健康和社会互动.

研究的目的:

为了调查患有莫比乌斯综合征和眼不完全关闭的个体的生活经历.
了解拉戈法塔尔摩斯在MoS患者的心理社会影响.

主要方法:

在2023年MoS基金会会议上使用半结构化的焦点小组进行定性研究,有15名MoS参与者 (12名成年人,3名青少年).
使用NVivo对数据进行了主题分析;眼关闭,眼,死和眼收缩被客观地评分,使用已建立的系统 (Terzis和Bruno,MRD1/MRD2).

主要成果:

所有参与者都表现出带有缩表现的斜眼,阴和眼收缩 (眼关闭的中位数为3).
关键主题包括社会耻辱,日常生活的影响,季节性症状恶化,不同年龄组对手术干预的不同看法以及自我接受.

结论:

在MoS中,眼不完全关闭带来了巨大的社会挑战,特别是在社会互动中.
开发有针对性的沟通策略和支持系统对于MoS和其面部差异的人来说至关重要.

关键词:

眼的闭合眼的闭合面部面部面部拉戈夫塔尔莫斯 (Lagophthalmos) 是一个长足的体.莫比乌斯综合症莫比乌斯综合症

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