Background: Recent research has been focused on those attributes that appear to buffer a person against the stresses and strains of living with a visible difference.
Aim: To provide some insight on how young adults with Crouzon syndrome handle their life.
Design: Telephone interviews were carried out with eight Crouzon syndrome individuals (six males, two females, mean age 25.4 years) and data were analysed according to the qualitative method of grounded theory.
Results: The informants' main concern was to make the best of their situation, showing that even in adverse conditions, as in Crouzon syndrome, several individuals do find ways to live with their difference and to succeed in various aspects of life, using strategies they construct. Such strategies, as identified from the present investigation, were labelled: committed to an engaging activity, avoiding exposed situations, actively launching oneself, struggling with normalizing facial appearance, and lowering the expectations of finding a love partner.
Conclusions: The adaptation of successful coping strategies seemed to be crucial in the quest of attainment of higher self-esteem. The more the participants in the study used the coping strategies they had developed over time, the better they handled their life situation, which led to enhanced well-being.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1111/j.1365-263X.2010.01079.x | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Simultaneous Lefort 2 Distraction and Fronto-Orbito-Malar Advancement: Correcting Severe Upper and Midface Retrusion in a Patient With Crouzon Syndrome.
J Craniofac Surg
December 2024
Member of Sociedad Argentina de Ortodoncia, Member of International Society of Craneofacial Surgery, Member of Asociación Latinoamericana de Ortodoncia, Buenos Aires, Argentina.
Craniofacial syndromes present with exorbitism and airway obstruction as a result of upper and middle facial hypoplasia. Classical subcranial Lefort III (LF III) or monobloc distraction osteogenesis (DO) using an external craniofacial device is used to treat these deformities. These procedures are done during mixed dentition, in most cases, advancing an abnormal face, to a more normal position.
View Article and Find Full Text PDFSurgical treatment of craniofacial cleft and orbital hypertelorism: a single-center cohort study.
Neurosurg Focus
January 2025
3ENT and Head and Neck Research Center and Department, The Five Senses Health Institute, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.
Objective: Craniofacial clefts, characterized by congenital disruptions in the development of facial and cranial tissues, often present alongside orbital hypertelorism (ORH), an abnormal increase in the interorbital distance. These conditions pose significant challenges in craniofacial surgery due to the complex anatomical and functional considerations involved. This single-center cohort study retrospectively analyzed 22 patients diagnosed with craniofacial cleft syndromes and ORH who were treated at the Craniofacial Centre, Fatima Plastic and Reconstructive Surgery Hospital between July 2016 and October 2023.
View Article and Find Full Text PDFCervical spine considerations in Goldenhar syndrome: a clinical perspective.
Childs Nerv Syst
December 2024
NJ Craniofacial Center, Morristown, NJ, 07960, USA.
Background: Goldenhar syndrome is a clinically heterogeneous disorder defined by a rare combination of congenital anomalies-an eye abnormality, in addition to two of the following three: ear anomalies, mandibular malformations, and vertebral defects. Notably, children with Goldenhar syndrome present with a high incidence of cervical spine malformations.
Clinical Case: In this report, we present an unusual case of a 15-year-old child with Goldenhar syndrome, who additionally presents with some clinical features of VACTERL syndrome.
Bilevel positive airway pressure treatment of sleep apnea syndrome in a patient with Crouzon syndrome.
Sleep Breath
November 2024
Chantilly - Les Jockeys Hospital, Gouvieux, France.
Crouzon syndrome (CS) is a hereditary disorder characterized by deformities of the face and skull brought on by syndromic craniosynostosis or the premature fusion of coronal sutures. Pediatric patients with Crouzon syndrome have a high likelihood of developing obstructive sleep apnea (OSAS), primarily due to skeletal hypoplasia and facial dysmorphism. Treatment of OSAS in patients with Crouzon syndrome requires multidisciplinary and sequential treatment planning because Crouzon syndrome often has different phenotypes with varying severity in OSA and facial dysmorphism.
View Article and Find Full Text PDFImaging of Treacher Collins syndrome: A case report.
Radiol Case Rep
January 2025
Department of Internal Medicine, NAIHS, Kathmandu, Nepal.
Treacher Collins syndrome, also known as mandibulofacial dysostosis, is a rare congenital disorder affecting craniofacial development. It is caused by an autosomal dominant mutation, primarily in the TCOF1 gene, which impacts the development of the first and second branchial arches. We present the case of a 12-year-old male with bilateral conductive hearing loss and deformed ears, whose clinical and imaging findings were consistent with Treacher Collins syndrome.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!