Through their eyes: Navigating life with limited eyelid closure in patients with Moebius syndrome.

Autor: Mulenga CM; Division of Plastic Surgery, Indiana University School of Medicine, USA. Electronic address: cmulenga@iu.edu., Tran KD; Division of Plastic Surgery, Indiana University School of Medicine, USA., Jorge MD; Division of Plastic Surgery, Indiana University School of Medicine, USA., Crabtree JR; Division of Plastic Surgery, Indiana University School of Medicine, USA., Henriquez MA; Division of Plastic Surgery, Indiana University School of Medicine, USA., Boente CS; Department of Ophthalmology, Indiana University School of Medicine, USA., Meanwell EV; Division of Plastic Surgery, The Hospital for Sick Children, USA., Zuker RM; Division of Plastic Surgery, The Hospital for Sick Children, USA., Bogart KR; Department of Sociology, Oregon State University, USA., Borschel GH; Division of Plastic Surgery, Indiana University School of Medicine, USA. Electronic address: gborsche@iu.edu.
Jazyk: angličtina
Zdroj: Journal of plastic, reconstructive & aesthetic surgery : JPRAS [J Plast Reconstr Aesthet Surg] 2024 Nov; Vol. 98, pp. 230-239. Date of Electronic Publication: 2024 Aug 14.
DOI: 10.1016/j.bjps.2024.08.052
Abstrakt: Background: Moebius syndrome (MoS), a rare congenital condition caused by the underdevelopment of the sixth and seventh cranial nerves, presents with uni- or bilateral facial paralysis and lateral gaze palsy. Those with MoS often have incomplete eyelid closure (lagophthalmos). This study aimed to investigate the experiences of individuals living with incomplete eyelid closure due to MoS.
Methods: Participants shared their experiences in semi-structured open-ended focus groups during the 2023 MoS Foundation Conference. Data were analyzed thematically using Nvivo. The Terzis and Bruno scoring system was used to grade participant eyelid closure (range: 1 being no eyelid closure with full scleral show to 5 being complete eyelid closure with no scleral show) and blink (from 1 being no blink to 5 being synchronous and complete blink present). Marginal reflex distances 1 and 2 (MRD1 and MRD2) were measured to grade for ptosis and lid retraction, respectively.
Results: Fifteen participants participated in two focus groups, comprising adults (n = 12) and adolescents (n = 3). All participants had lagophthalmos with some scleral show, ptosis, and lid retraction. The median eyelid closure score was 3 (incomplete eye closure with 1/3 scleral showing). Five key themes were identified: social stigma and misunderstanding, daily life impacts, seasonal exacerbations, different attitudes toward surgical intervention between adults and adolescents, and a prevailing sense of self-acceptance regarding their condition.
Conclusion: Incomplete eyelid closure poses significant social challenges for individuals with MoS, especially around social encounters. Our findings show the importance of developing tailored communication tools to support those living with this facial difference.
(Copyright © 2024 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Ltd. All rights reserved.)
Databáze: MEDLINE
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